Alzheimer’s/Dementia and Neuromuscular Disorders
Acceptability of an Advance Directive That Limits Food and Liquids in Advanced Dementia
American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114554078 ajhpm.sagepub.com
Ladislav Volicer, MD, PhD1, and Karen Stets, RN1
Abstract Some individuals fear living with advanced dementia and may even commit suicide if they receive dementia diagnosis. Living with advanced dementia could be prevented if a person who cannot feed himself or herself would not be fed by others. The purpose of the study was to find out how acceptable would be an advance directive that includes discontinuation of feeding at certain stage of dementia for relatives of persons who died with dementia. All participants of 2 focus groups would be willing to indicate at least 1 condition in which they would not want to be fed. Some of them would be willing to make a proxy decision to stop feeding in the absence of advance directives. Keywords dehydration, fear of dementia, suicide, religion, proxy
Increased prevalence of Alzheimer disease and other progressive dementias is becoming a modern epidemic that affects the lives of many older individuals and threatens to bankrupt health care systems worldwide. Because age is the main risk factor for these diseases and worldwide population is aging, the prevalence of dementia is predicted to increase by the year 2050 at least 3-fold in developed countries and at least 4-fold in developing regions with fastest growing elderly populations.1 In the United States, Alzheimer disease is the only main disease due to which mortality is increasing,2 and a recent analysis found that death of individuals with dementia comprised 32% of all older adult deaths in 2010, and this number is projected to increase to 43% by 2050.3 In Australia, it was reported that dementia is the second leading cause of death in women.4 The general population is becoming increasingly aware of these statistics with a consequential fear of developing dementia. A recent survey in United Kingdom found that people are more afraid of developing dementia than developing cancer (21% vs 18%), and this fear is especially common in people older than the age of 60, where 29% are more afraid of dementia and only 9% are more afraid of cancer.5 There are several reasons for this fear which include loss of memory, loss of autonomy, becoming burden to others, loss of dignity, possible suffering, and high cost of care. How rational this fear is depends on personal philosophy and preferences and on the quality of care provided to persons with advanced dementia. There are some programs, for example, Namaste Care,6 that strive to maintain quality of life until death. However, not everybody is able to receive such care and in some cases caring for advanced dementia results in the tragedy of murder/suicide.7
Some people are trying to prevent living with advanced dementia by establishing advance directives/living wills that limit aggressive medical interventions, usually cardiopulmonary resuscitation, transfer to an acute care setting, use of feeding tubes, and treatment of generalized infections with antibiotics.8 However, even if these advance directives are honored, they may not prevent living with an advanced dementia because some people do not require any of these interventions for survival. That led to some people considering suicide when they were still able to do it, for example, the first ‘‘patient’’ of Dr Kevorkian, Janet Adkins.9 Such action deprives them of living with mild dementia for some years that they can still enjoy. Unfortunately, this strategy is even recommended by some leaders of right-to-die activist organizations such as Final Exit Network, a splinter group from the Hemlock Society.10 Some persons with advanced dementia stop eating and drinking. If this refusal is honored, it results in death from medical dehydration. Such a death does not cause discomfort if dryness of the mouth is treated. Patients who had no cognitive impairment and stopped eating and drinking were considered by hospice nurses to have a more peaceful dying than those who chose physician-assisted suicide11 The challenge is that 1
School of Aging Studies, University of South Florida, Tampa, FL, USA
Corresponding Author: Ladislav Volicer, MD, PhD, School of Aging Studies, University of South Florida, Tampa, FL, USA, 2337 Dekan Lane, Land O’Lakes, FL 34639, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
2 the patient cannot make such a decision after their dementia has progressed, patients in an early stage of dementia may be unaware of this option, and may still consider suicide. Some may decide that they want to stop eating and drinking, but despite this previous decision, they sometimes ask for food and drinks which puts his or her caregiver in a difficult situation.12 Advance directives, which would specify that the person does not want help with eating and drinking if he or she reached certain stage of dementia were proposed to prevent living in an advanced stage of dementia.13,14 Terman calls this option, ‘‘Natural Dying,’’ and discussed it in several YouTube presentations. He also designed 48 cards that depict various conditions that can occur in advanced dementia and can be used by a person completing advance directives to determine when administration of food and liquids should be stopped.15 Since stopping administration of fluid and liquids is still controversial in the US society,16 we decided to investigate whether this strategy would be acceptable to persons who had experienced a family member who died with advanced dementia. Our hypothesis was that the participants would be willing to make an advance directive specifying that they would not want to be given food and liquids in at least 1 condition shown by the selected cards.15
Methods Patients About 177 relatives of patients with dementia who died between 6 and 12 months ago in a hospice were contacted by phone and asked whether they would be interested in participating in a research study investigating a new approach to advance directives. In all, 27 were interested and received informed consent forms by mail, but only 15 actually attended 1 of the 2 focus groups: 12 spouses (4 husbands and 8 wives), 2 daughters, and 1 son-in-law. The study was approved by the Institutional Review Board of the University of South Florida.
Procedure The focus groups were led by the 2 authors. They greeted the participants and introduced themselves and the participants. The purpose of the meeting was explained as being a discussion about prevention of premature dying (Janet Adkins) and murder/suicide tragedies. Participants were asked to remember what their experiences were when their family members were dying (about 45 minutes). The second topic was a discussion about their advance directives and the ability of these directives to prevent a prolonged dying with advanced dementia (about 15 minutes). This was followed by a description of the ‘‘Natural Dying’’ strategy13 that included the following main principles: a. No life-sustaining treatment whose goal is to try to keep you alive. b. No food or fluid by tube or by another person’s hand to assist oral feeding and drinking when the person cannot eat and drink by themselves. However, food and fluid
will always be placed near the person to allow him or her to eat and drink–if he or she can without help. c. All needed comfort care would be provided, especially including agents to control dryness of person’s mouth. Following this, 9 cards from the total of 48 Natural Dying Living Will Cards15 describing conditions that may occur in advanced dementia were presented. We selected cards that showed severe conditions that we considered likely to be unacceptable to the study participants. The participants discussed each card and then were asked whether they would want to be given food and liquids if they were in that condition and could not eat by themselves. Show of hands was counted for Yes, No, and Unsure. After this discussion, participants were asked whether they would be comfortable making the decision to stop administration of food and liquids for their family members who they believed would rather die instead of living with advanced dementia and did not have advance directives specifying this option. Participants were also asked whether the advance directive specifying the food and liquids should not be administered, should be disregarded if the person indicates verbally, or nonverbally indicates that he or she does want such help. Finally, they were asked whether the ‘‘Natural Dying’’ strategy would be in conflict with their religious beliefs (about 1 hour). The focus group discussions were recorded, transcribed, and analyzed by QDA Miner 4 Lite v 1.0.2 program (Provalis Research, Montreal, Canada). Several codes were developed according to topic of this research and participants’ responses and used to mark passages of transcriptions. Coded sections were combined according to the codes, and representative quotations were used for preparation of the manuscript.
Results Results are presented as representative statements of focus groups’ participants related to specific topics. The comments are indented to distinguish them from the text and are organized according to codes used in QDA Miner 4 analysis. The initial codes were selected according to the topics of research and were further subcategorized according to responses. Additional codes were added according to responses, for example, acceptability of this advance directive to health care providers.
Experiences With Advanced Dementia Impact on person with dementia. One of the reasons why people fear dementia is that they are afraid of suffering. Therefore, we asked our participants whether they felt that their family members suffered. One participant reported that her husband was aware of his deficit: I think my father knew. He would say things like ‘‘I just cannot get my thoughts together’’ but the saddest thing was one day coming in (He was always watching the news, he stopped reading the paper), he was just staring in space. And I asked, What are you doing? And he said I am just trying to put my thoughts together. That’s when he expressed to me that he is just losing ideas.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
3
However, others felt that their husbands were not aware of the deficit: I asked him one day, we had breakfast, and I said ‘‘Bud, are you afraid because your mind is not exactly right?’’ And he looked square at me and said ‘‘Not at all’’. So I am not so sure how much they realize what is happening with them.
Some participants also reported physical suffering their family member had before death, despite being involved in a hospice program: Another pneumonia which happened in 2010 took all his strength away, couldn’t walk anymore and once he could not walk we had problems with the pressure sores, he was a skinny guy . . . Pressure sores would start healing and something would happen and then get worse and we would go to a Stage 4 ulcer in a week and he would get another one on the other side My husband suffered at the end because he was chewing and eating himself.
Family members of 3 of our participants refused food and liquids before they died. Two of them died at home and the other in a hospital. All felt that the persons with dementia experienced a good death: So with my wife it was almost a natural progression. I kept her at home. When she stopped eating she still drank water and I gave her baby food, she ate that for couple of days. I gave her nectar juice and she lasted another week and a half . . . and then she went into coma and in three days she was gone. We both had advance directives not to feed if there is no quality of life left, no artificial means of any kind, no force feeding. My wife was quite advanced within the last two weeks she would take so little, she could not sustain herself. Three days before we went to hospice she would not take anything. She would fight; she would not swallow a thing, nothing.
Keeping people alive is not because it is best for them but because it is best for us. My husband at his end, for months, I could still touch him, I could put my arm around him, I could get in the bed with him. And I told a nurse, it means a lot to me. I do not know if it means anything for him. ‘‘And it means a lot for him too,’’ she said. We cannot let go.
Family members of 3 of our participants refused food and water before they died. Although all of them felt that they experienced a good death, they still had problem during the last days: The last three days were the worst for me, watching her starve to death. It happened two years ago and I am just getting the image out of my head.
Another burden that the caregivers experienced was the need for making decisions about medical care for their family members: I was in a position to decide is he at the end stage or should he still have some intervention. This was really hard, because his vital signs were OK, he still recognized us, we could still have some conversation even though he repeated himself a lot, he was not all there. He needed help since he was incontinent. So end stage for him was that he started to develop an infection, he is 90 now. They did give him high doses of antibiotics at his assisted living facility but we decided not to send him again to the hospital because every time he went for bowel impaction he came back one step down. You know, then he was not walking. But we decided to send him one more time, because it was an infection may be we can hit it, really hard. Gastroenterologist told us he has an abscess in the liver that we can treat easily, and it was treated but he died anyway.
Current advance directives. We asked the participants whether their relative had advance directives. Almost all had some. Most of them considered only aggressive medical interventions and some of them were not made after thorough discussion of alternatives:
Impact on the caregiver. Another reason why people fear dementia is that they do not want to be a burden for their family members. Therefore, we asked our participants whether they had bad experiences during their caregiving. Some of them reported:
The doctor came in and he said to me ‘‘Mrs. Doe would you consider a feeding tube?’’ I stopped and said ‘‘No’’ and he said ‘‘would you consider resuscitation?’’ and I said ‘‘No’’ and had me sign a paper and that was as smooth as smooth can be.
I would be out in the front yard at 3 a.m. because my husband never slept so he was out all over the place and I can remember sitting there crying because everybody else was asleep in the neighborhood and I was out.
Our participants reported that they were contacted about some interventions, such as tube feeding and transfer to a hospital, and were able to select palliative care at that time:
My husband fell all the time; all my friends said ‘‘all you have to do is call 911’’. I said, I would have 911 here every hour and half, I cannot do that. I rely on my grandson. I tried as hard as I could and every way, I could not get him up
He aspirated. A nurse called me and he had pneumonia. I said go ahead give him antibiotics and see if it works. She called and said it does not work. ‘‘Do you want him in a hospital.’’ I was actually out of town. I said ‘‘No do not put him in the hospital, his time has come. We talked about it.
However, others felt that caregiving had a meaning for them and that they wanted the person with dementia to live as long as possible:
She was not able to swallow [in a hospital]. Well, when she was at home she was eating OK, so they wanted to know if I want a feeding tube inserted and I said ‘‘No, let me bring her home.’’
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
4 Table 1. Responses of Participants to Selected MY WAY Cards.a Text of the card
Forgetting life-long ideals. The way I act shows that I forgot my lifelong ideals. If I could see my future actions now, I would feel shame and I’d feel sorry since my actions would hurt my husband or my wife, and others, like children. Inability to communicate. I cannot say or show what I want by using words, moving my hands, or changing the look on my face. Severe pain. I have severe pain. But I cannot say what bothers me. Doctors don’t see my pain. They do not treat my pain Recognition of others. When I see people in my close family or see my best friends, I do not know who they are Incontinence. I do not use bathrooms. I let my clothes get wet and dirty. Others must change my diapers (nappies) Apathetic state. Almost all the time, I stay very quiet by myself. I look very sad. I have no interest or energy to do anything. I cannot share joy or have fun with others Intensive medical care. To keep me alive, others must take care of me and watch over me almost all the time night and day Cost of care. My care costs a lot of money. I won’t get better. I’d rather use my savings to help my family. For example: to send my grandchildren to college Difficulty eating. I cannot eat in the usual way. I forget to swallow so food stays in my mouth. Helpers place very soft food at the back of my tongue so that I swallow by reflex. This is forced-feeding
Would want natural dying
Would not want natural dying
Unsure
7
8
0
13
2
0
15
0
0
15
0
0
8
7
0
10
3
2
10
3
2
6
8
1
15
0
0
a For descriptions of pictures of the cards see text. The responses indicate if participants would or would not make advance directive for themselves indicating that they do not want to be fed and given liquids if they were in this condition.
However, 1 participant reported that she has a living will that would eliminate food but continue provision of liquids: I think that’s what my living will says, ‘‘No food but water’’ and the reason is, my mother broke her hip, she had a stroke, massive stroke and she was totally gone, and she would choke to death, we were afraid some nurse would come to feed her and she would choke to death. So she did not get any food but she got fluids, and she had very quiet, peaceful death.
Responses to natural dying presentation. The whole concept, described in the Method section, was well accepted by study participants: This is good because it is addressing the next thing ‘‘no food, no water’’ because most advance directives do not address this at all. If you cannot do it, be it mental or physical, where do you draw the line? Even if you had discussion, even if it is in writing it is still hard. Well it’s the same thing as life support, whether you want to be on a life support, it is a different type of support. I think it is great. It just takes burden from anybody else. That is what advance directives are supposed to do. You get to decide and not burden somebody else with that decision. I wished I knew this. I would not probably have had him fed. Because to me he was suffering.
administration of food and liquids. Wording of each card is listed in Table 1. Each card also had a graphic depiction of the described condition. After each card presentation, we discussed it and we asked how many would select not being fed and given liquids. The choices were Yes, No, and Unsure, and number of respondents for each card is shown in Table 1. Forgetting lifelong ideals. The card shows a couple in bed with a visitor being surprised by seeing them together. Seven of the participants would select not being fed and given liquids if they were in this condition: Me, I would not want to live like that
While 8 did not feel this condition would be bad enough for Natural Dying: Well she had a good time, I think it is great: men and women sitting together and holding hands, like Sandra Day O’Connor’s husband, he had relationship with somebody else and she said it was great, I would say so too.
Inability to communicate. The card shows a person in a wheel chair saying words that are unintelligible. This condition was considered a reason for not being fed and given liquids by 13 of the 15 participants:
Presentation of Natural Dying Living Will Cards
I would not want to be there. Nope. Why should I be alive?
We selected 9 cards of the total 48. These cards presented conditions that may be considered good enough reasons to stop
Some people want to live under any circumstances. And some of us do not want to live like that.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
5
I would be a burden on my son and daughter and two grandkids, I would not want to live like that. So, this is a good point, I would not want to live like that.
Severe pain. The card shows a person in distress sitting on a bed with a physician in front of him, holding chart and being confused (question marks around his head). Thirteen of the participants would prefer not being fed and given liquids in this condition instead of continuing administration of food and liquids. If I am a vegetable and if I am not gone before that, somebody is not doing their job. When I am over, I want to be gone. What I mean if I cannot be myself any more. All these pertain to me.
Recognition of others. The card shows parents with 2 children visiting their grandfather who does not recognize them. Thirteen of the participants would prefer not being fed and given liquids in this condition. I would not want to live like that.
Intensive medical care. The card shows 2 staff members walking quickly past an open door of a patient’s room where somebody worried is sitting by the bed. It suggests need for round-theclock care. Of the participants, 10 would not want to live like that, while 2 others were unsure. Most comments were about being unsure or accepting this condition. See, if you not in any pain and you are not uncomfortable and the makeup of your personality is not causing any problem and the nurses are nice to you and give you good care, there is no problem. A nurse came to our house when we were thinking about 24 hour care at the house. At that point, I was basically crawling on my knees, my husband was going down, and I remember what she said ‘‘Somebody has to come out of this alive’’ I would not want to live like that, . . . . I would probably say, ‘‘No,’’ but it is not specific enough.
Cost of care. The card shows a person in bed thinking about the graduation of young people. Only 6 participants stated that they would not want to live like that and 1 was unsure.
It was just the last 3 or 4 months when he would just stare in the space, I would stop it.
If my husband knew how much it cost, he would be dumbfounded.
That’s not living.
But when that time comes, what is the problem? Financially, for me it was not a problem, I kept her at home.
Incontinence. The card shows a nurse changing ‘‘Depends/diapers’’ of a patient who is lying in bed. Of the 15 participants, 8 felt that they would not want to live in that condition and prefer not being fed and given liquids. No way, that’s awful.
If I am aware why would they not feed me?
Difficulty eating. The card shows a person in bed being fed by a spoon with food dripping out of his mouth. Of the 15 participants, 13 felt that they would not want to live this way and would prefer not being fed and given liquids.
It is the most demeaning thing. It is horrible. Only if the nurse was good looking. [JOKE]
Others felt they could live with it: I would accept that. I would not like it. I would not like it. Looking back at my mother and husband again, I do not think it bothered them.
Apathetic state. The card shows a person sitting in a wheelchair oblivious of a celebration going on in the room (possibly birthday party). Ten of the participants would not want to live like that while 2 were unsure. Yes, no that’s part of the dementia, nobody wants that dementia because that’s what you end up like. Yes, that’s not living to me. If there is no expectation of change. That could be a temporary situation, especially if you had a pretty nurse. I am not sure.
Decision by a Proxy Focus group participants were asked whether they would be willing to stop providing food and liquid to somebody who did not make an advance directive specifying that he would rather not prolong his dying by being fed in a condition of advanced dementia and who they believed would want to die instead of living with advanced dementia. Some of them felt that they would be able to do that: I do not know. I might because when he began chewing himself, I probably would be able to. Maybe not earlier but at that point. I think so, because I was shocked a little bit and then I started thinking: she just let him go peacefully. It took him two weeks but he went peacefully. I am an advocate for telling people, but a lot of people do not think about what you’re going to do when you die. Or before you die, they are not facing that they are not going to be here forever. It just boggles my mind. I would not mind for my daughter to make that decision (for me) because I feel that she would do what would be best for me. [Daughter agrees]
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
6 However, others felt that they were unsure if they could make this decision: I do not know if I could make that decision because I was not ready to lose him. Well, I mean he would never be force-fed, I do not know if I could make that decision. Or felt that making such a decision would put too much guilt on the decision maker. No, I would not do that, that would put too much guilt on them. However, one participant reported that withdrawal of food and liquids may be already done informally when the person is being cared for at home: You know there was a person . . . I think she make a decision not to feed her husband. He lasted two weeks. I talked to her afterwards and she said that he could not feed himself anymore and she made a decision not to feed him.
Other Issues The participants were asked if an advance directive that includes stopping administration of food and liquids would be unacceptable because of their religious beliefs. All of them said ‘‘No’’ to this question. You know, if we just let nature, God or force, had its way we would die, we are interfering with a natural process.
Another issue that was raised was how they would respond if a person who had an advance directive which specified that he does not want food and liquids in his condition but then indicates verbally or nonverbally that he wants help in eating or drinking. Everybody indicated that such a person should receive help with eating or drinking if he or she asks for it, although it is against the wishes he expressed in his advance directive. If I pointed to something and an aid would see if I want a little and help . . . you have to try if they are pointing.
Acceptability by Health Care Providers Although this study was not designed to determine how advance directives specifying withdrawal of administration of food and water would be acceptable by health care providers, we obtained some evidence that in some settings (especially hospice), this advance directive would be honored: Hospice came to [assisted living] twenty-four hours each day . . . he was not given food or water, although his directives said water. I had a regular [hospice] team but at the end of life they sent a different team specializing in that. But that was only for two days. But before they came they gave food and water. But after they came, they gave him nothing.
Discussion The results of this study indicate that an advance directive specifying withdrawal of food and water at a certain stage of dementia would be acceptable to individuals who experienced their family members dying with advanced dementia. The stage of dementia at which these directives should be implemented differed, but all participants found at least 1 condition in which they would prefer to die by dehydration instead of being provided food and liquids by another’s hand. The conditions that all focus group participants would not want to live with included severe pain, inability to recognize family or best friends, and being force-fed. Pain is usually not caused by dementia itself, but many persons with dementia also have other conditions that can cause pain, for example, arthritis, old fractures, neuropathy, and malignancy.17 Perception of pain may be expressed nonverbally and several scales were developed to help in recognition of pain in advanced dementia.18 However, it is possible that in very advanced dementia, persons’ cognitive state is such that they perceive pain but are unable to communicate they are suffering in any way. There is an indication that this may be happening in patients who are in minimally conscious state (MCS). Positron emission tomography imaging in these patients showed that their brain activity in response to electrical shocks was similar to brain activity in healthy individuals, but they did not manifest reliably behavioral signs of pain.19 Although there is some evidence that patients with Alzheimer’s disease do not progress into a persistent vegetative state,20 they may reach MCS. Another condition with which our participants would not want to live was inability to recognize family and friends. That is somewhat surprising because persons with advanced dementia may enjoy company of others even when they do not recognize them.21 However, this opinion probably reflects experiences of our participants who became very upset when their family members became unable to recognize them. The third condition in which our participants would not want to live was forcefeeding. The reason for this opinion was reports of several participants whose family members stopped eating and drinking and had a peaceful death. It was reported that death of persons who stopped eating and drinking is more peaceful than death of persons who committed physician-assisted suicide9. Persons who stopped eating and drinking die of dehydration in which the main discomfort is caused by dryness of the mouth. Our participants felt that an advance directive specifying food and liquid withdrawal should not prevent providing help with eating and drinking if the person with dementia asks for it or indicates nonverbally that it is desired. This is in agreement with the general principle that a person can always change his or her mind and revoke advance directives. It is possible to argue that persons with advanced dementia do not have the capacity to make this decision, but decision-making capacity depends on the nature of the decision and persons with dementia may be able to make simple decisions, for example, which clothes to wear. They certainly are able to stop eating and drinking as several of our participants reported. Therefore, they
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
7
may also have the capacity to revoke their previous decision about food and liquid withdrawal and indicate that they want help. However, it is possible to argue that their current decision does not take into consideration some of the reasons for which they made their advance directives and which they can no longer appreciate. The protocol of substituted judgment allows proxies of persons who lost their decision-making capacity to make decisions regarding their treatments.22 Thus, it is possible to propose that proxy could make a decision that a person with dementia who is unable to feed himself or herself should not be given food and liquids. However, ability of proxies to make some decisions is sometimes limited; for example, refusal of tube feeding in New York State requires clear evidence that the person would not want it. Similar limitations may be imposed on a proxy’s decision about providing oral intake for a person who is unable to eat and drink unassisted. The proxy may have a conflict of interest and make this decision earlier than the person with dementia would want. There would be a need for some safeguards before such a decision would be accepted. Our focus group participants were divided; some of them felt that proxy decisions to stop providing food and liquids would be appropriate and some of them felt that they could not do it because they would not want to lose the family member or would feel too much guilt in making such a decision. All participants in our focus group stated that an advance directive that would include withdrawal of food and liquids would not conflict with their religious beliefs. We did not ask about their religious affiliation, but this advance directive would not be acceptable to some Catholics who would consider handfeeding an ordinary treatment that should be always provided. However, continued hand-feeding could extend the condition of a person whose advance directive found it unacceptable. Thus, a principle of double effect could be invoked, suggesting that stopping food and liquids is done to prevent continuous suffering by providing a comfortable death by dehydration. Most research studies about terminal dehydration concluded that dehydration is not causing discomfort beyond dryness of the mouth that can be easily managed by ice chips or artificial saliva spray.23 If both food and liquids are stopped, dehydration is isotonic and causes less thirst than hypertonic dehydration that occurs only when the intake of food is discontinued.24 Dehydration may make dying more comfortable by limiting secretions in the respiratory and gastrointestinal system, decreasing the need for suctioning and risk of vomiting and diarrhea. Decreased urine production may be also beneficial in incontinent individuals because it results in less irritation of the skin.23 Dehydration causes release of vasopressin and there is some evidence that endorphins are coreleased decreasing the perception of pain.25 Another mechanism by which stopping intake of fluids and food may increase comfort is through increased formation of ketone bodies.26 Ketones increase formation of g-amino butyric acid, which is the main inhibitory brain neurotransmitter and which decreases the risk of seizures.27 Our study has some limitations. Participants in our focus groups were family members of persons who died with
advanced dementia. We selected this population because they may best evaluate the burdens of advanced dementia and acceptability of food and liquid withdrawal. However, because of this selective population, our results may not reflect the opinions of society at large. Our study included small number of participants from 1 geographic area and the responses may be different in other areas of the country. It is also possible that potential participants who refused to participate would have different opinions about the acceptability of food and liquid withdrawal. Another limitation is that our study did not evaluate a procedure for preparation of an advance directive that limits administration of food and liquids, as proposed by Terman.15 We used only 9 cards to illustrate conditions of persons with advanced dementia which we considered likely to be unacceptable to the study participants and asked only for decisions regarding these specific conditions. Terman’s procedure is to use all 48 cards that are sorted into 3 categories, Treat and Feed, Enough suffering by itself for Natural Dying, and Natural Dying with other items or severe enough—as determined by the proxy. Thus, the person specifies conditions that are definitely acceptable, conditions that are definitely not acceptable, and conditions that may be considered unacceptable when combined with others. As we did not provide the third option, some participants were unsure how to answer some cards. Some of them also reported that the card depicting apathetic behavior was not descriptive enough because this behavior could be caused by lack of meaningful activities or untreated depression. However, the cards provide better guidance than just description of different stages of dementia.14 We used only 9 cards because using more of them would be difficult in a group situation. Our study also did not assess the acceptability of advance directives that stop help with feeding and drinking by health care providers. A court decision was required to force High Desert Hospital to honor request of Ms Bouvia that she not be fed through a tube which would result in her death.28 Stopping giving fluids and liquids to an individual who can still swallow may be more controversial. However, participants of our focus group reported that hospice programs were quite willing to stop administration of food and liquids to individuals who were refusing feeding. Whether or not they would be willing to stop feeding individuals who would accept feeding but have advance directives specifying that the feeding should be stopped remains to be established. Advance directives are not always honored29 and if they are more controversial, they may be followed less often. Health providers may raise a question about capacity of the person who made advance directives, but this could be obviated by video recording the person during decision making, as proposed by Terman.13 Future research is needed to investigate whether these advance directives would be acceptable in other areas of the country and whether health care providers would accept them. It can be expected that only a small number of individuals would make these advance directives because even traditional advance directives are made by only small number of people. Bigger impact on care for people with advanced dementia would be acceptance that decision to stop giving food and
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
8 liquids can be made by a proxy. However, this policy decision would require safeguards to prevent proxy from making this decision based on financial or other unacceptable reasons and requires further investigation. Another issue to investigate is whether food and liquids should be placed in front of a person who specified in advance directives that he or she does not want to be fed. That would prevent a situation in which the person can indicate that he or she wants help with eating or drinking that would override advance directives. If a person wanted to be completely sure that he or she will not live beyond this specified state, he or she would have to include in the advance directives statement that at that state, food and liquids should not be offered. Putting food and liquids in front of the person who cannot use them himself or herself provides opportunity for revocation of the advance directive but could also be considered cruel if the person does not change his or her mind. In conclusion, advance directives that would stop help with feeding and drinking are acceptable to people who experienced a family member dying with dementia in our geographic area. Conditions which they would specify in advance directives as reasons for stopping food and liquids included severe pain, inability to recognize family or best friends, and being forcefed. Availability of these directives may decrease fear of living with advanced dementia in persons with this diagnosis and prevent premature suicides. These directives may also prevent suffering with advanced dementia that may lead to murder/ suicide. It remains to be established whether these advance directives would be acceptable to general population and whether health care providers would honor them. Acknowledgments We would like to thank hospice volunteer Caroline Barner for contacting the possible study participants and her hospice organization for providing list of these participants. Dr Terman was involved in design of this study and provided a recording device, but he did not comment on the results or conclusions before we submitted them. We would like to thank all study participants for their participation. We thank Dr Terman for providing recording equipment.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
References 1. Norton S, Matthews FE, Brayne C. A commentary on studies presenting projections of the future prevalence of dementia. BMC Public Health. 2013;13:1. 2. Alzheimer’s Association. 2014 Alzheimer’ Disease: Facts and Figures. 2014. http://www.alz.org/alzheimers_disease_facts_and_figures.asp. Accessed October 6, 2014.
3. James BD, Leurgans SE, Hebert LE, Scherr PA, Yaffe K, Bennett DA. Contribution of Alzheimer disease to mortality in the United States. Neurology. 2014;82(12):1045-1050. 4. Craig K. Dementia second leading cause of death in women. http:// www.fightdementia.org.au/dementia-second-leading-cause-ofdeath-in-women.aspx. Accessed March 25, 2014. 5. Channel 5 news poll. People fear dementia more than cancer. http://www.itv.com/news/2013-12-10/dementia-replaces-canceras-disease-people-fear-most/. Accessed March 25, 2014. 6. Simard J. The End-of-Life Namaste Program for People with Dementia. 2nd ed. Baltimore, London, Sydney: Health Professions Press; 2013. 7. Associated Press. Dementia led to Pa. couple murder-suicide. http://abclocal.go.com/wpvi/story?section¼news/local&id¼8601 495. Accessed March 25, 2014. 8. Volicer L. Palliative care in dementia. Prog Palliat Care. 2013; 21(3):146-150. 9. Alzheimer’s Disease and Related Disorders Association. A statement by the Alzheimer’s Association regarding the suicide of Alzheimer patient Janet Adkins. Issues Law Med. 1991;7(3): 379. 10. Humphry D. The tragic dilemma of Alzheimers. http://www.youtube.com/watch?v¼_jHcVEhZc_Y. Accessed November 19, 2011. 11. Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med. 2003;349(4):359-365. 12. Meisel A. A fading decision. Hastings Cent Rep. 2014;44(3): 14-16. 13. Terman SA. Peaceful Transitions. 2nd ed. Carlsbad, CA: Quality Books, Inc; 2011. 14. Menzel PT, Chandler-Cramer MC. Advance directives, dementia and withholoding food and water by mouth. Hastings Cent Rep. 2014;44(3):23-37. 15. Terman SA. Natural Dying Living Will Cards. Carlsbad, CA: Life Transitions Publications; 2009. 16. Dresser R. Toward a humane death with dementia. Hastings Cent Rep. 2014;44(3):38-40. 17. Ferrell BA, Ferrell BR, Rivera L. Pain in cognitively impaired nursing home patients. J Pain Symptom Manage. 1995;10(8):591-598. 18. Volicer L. Do we need another dementia pain scale? J Am Med Dir Assoc. 2009;10(7):450-452. 19. Boly M, Faymonville ME, Schnakers C, et al. Perception of pain in the minimally conscious state with PET activation: an observational study. Lancet Neurol. 2008;7(11):1013-1020. 20. Volicer L, Berman SA, Cipolloni PB, Mandell A. Persistent vegetative state in Alzheimer disease - does it exist? Arch Neurol. 1997;54(11):1382-1384. 21. Cohen-Mansfield J, Marx MS, Dakheel-Ali M, Regier NG, Thein K, Freedman L. Can agitated behavior of nursing home residents with demenia be prevented with the use of standardized stimuli? J Am Geriatr Soc. 2010;58(8):1459-1464. 22. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 3rd ed. New York and Oxford: Oxford University Press; 1989. 23. Jackonen S. Dehydration hydration in the termially ill: care considerations. Nurs Forum. 1997;32(3):5-13.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
9
24. Billings JA. Comfort measures for terminally ill: is dehydration painful? J Am Geriatr Soc. 1985;33(11):808-810. 25. Bondy CA, Whitnall MH, Brady LS, Gainer H. Coexisting peptides in hypothalamic neuroendocrine systems: some functional implications. Cell Mol Neurobiol. 1989;9(4):427-446. 26. Akram M. A focused review of the role of ketone bodies in health and disease. J Med Food. 2013;16(11):965-967. 27. Yudkoff M, Daikhin Y, Mela TM, Nissim I, Sonnewald U, Nissim I. The ketogenic diet and brain metabolism of amino acids:
relationship to the anticonvulsant effect. Annu Rev Nutr. 2007; 27:415-430. 28. Bayley C. The case of Elizabeth Bouvia: a strain on our ethical reasoning. Health Prog. 1986;67(6):40-47. 29. The SUPPORT Principal investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). JAMA. 1995;274(20): 1591-1598.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Acceptability of an Advance Directive That Limits Food and Liquids in Advanced Dementia
American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114554078 ajhpm.sagepub.com
Ladislav Volicer, MD, PhD1, and Karen Stets, RN1
Abstract Some individuals fear living with advanced dementia and may even commit suicide if they receive dementia diagnosis. Living with advanced dementia could be prevented if a person who cannot feed himself or herself would not be fed by others. The purpose of the study was to find out how acceptable would be an advance directive that includes discontinuation of feeding at certain stage of dementia for relatives of persons who died with dementia. All participants of 2 focus groups would be willing to indicate at least 1 condition in which they would not want to be fed. Some of them would be willing to make a proxy decision to stop feeding in the absence of advance directives. Keywords dehydration, fear of dementia, suicide, religion, proxy
Increased prevalence of Alzheimer disease and other progressive dementias is becoming a modern epidemic that affects the lives of many older individuals and threatens to bankrupt health care systems worldwide. Because age is the main risk factor for these diseases and worldwide population is aging, the prevalence of dementia is predicted to increase by the year 2050 at least 3-fold in developed countries and at least 4-fold in developing regions with fastest growing elderly populations.1 In the United States, Alzheimer disease is the only main disease due to which mortality is increasing,2 and a recent analysis found that death of individuals with dementia comprised 32% of all older adult deaths in 2010, and this number is projected to increase to 43% by 2050.3 In Australia, it was reported that dementia is the second leading cause of death in women.4 The general population is becoming increasingly aware of these statistics with a consequential fear of developing dementia. A recent survey in United Kingdom found that people are more afraid of developing dementia than developing cancer (21% vs 18%), and this fear is especially common in people older than the age of 60, where 29% are more afraid of dementia and only 9% are more afraid of cancer.5 There are several reasons for this fear which include loss of memory, loss of autonomy, becoming burden to others, loss of dignity, possible suffering, and high cost of care. How rational this fear is depends on personal philosophy and preferences and on the quality of care provided to persons with advanced dementia. There are some programs, for example, Namaste Care,6 that strive to maintain quality of life until death. However, not everybody is able to receive such care and in some cases caring for advanced dementia results in the tragedy of murder/suicide.7
Some people are trying to prevent living with advanced dementia by establishing advance directives/living wills that limit aggressive medical interventions, usually cardiopulmonary resuscitation, transfer to an acute care setting, use of feeding tubes, and treatment of generalized infections with antibiotics.8 However, even if these advance directives are honored, they may not prevent living with an advanced dementia because some people do not require any of these interventions for survival. That led to some people considering suicide when they were still able to do it, for example, the first ‘‘patient’’ of Dr Kevorkian, Janet Adkins.9 Such action deprives them of living with mild dementia for some years that they can still enjoy. Unfortunately, this strategy is even recommended by some leaders of right-to-die activist organizations such as Final Exit Network, a splinter group from the Hemlock Society.10 Some persons with advanced dementia stop eating and drinking. If this refusal is honored, it results in death from medical dehydration. Such a death does not cause discomfort if dryness of the mouth is treated. Patients who had no cognitive impairment and stopped eating and drinking were considered by hospice nurses to have a more peaceful dying than those who chose physician-assisted suicide11 The challenge is that 1
School of Aging Studies, University of South Florida, Tampa, FL, USA
Corresponding Author: Ladislav Volicer, MD, PhD, School of Aging Studies, University of South Florida, Tampa, FL, USA, 2337 Dekan Lane, Land O’Lakes, FL 34639, USA. Email: [email protected]
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
2 the patient cannot make such a decision after their dementia has progressed, patients in an early stage of dementia may be unaware of this option, and may still consider suicide. Some may decide that they want to stop eating and drinking, but despite this previous decision, they sometimes ask for food and drinks which puts his or her caregiver in a difficult situation.12 Advance directives, which would specify that the person does not want help with eating and drinking if he or she reached certain stage of dementia were proposed to prevent living in an advanced stage of dementia.13,14 Terman calls this option, ‘‘Natural Dying,’’ and discussed it in several YouTube presentations. He also designed 48 cards that depict various conditions that can occur in advanced dementia and can be used by a person completing advance directives to determine when administration of food and liquids should be stopped.15 Since stopping administration of fluid and liquids is still controversial in the US society,16 we decided to investigate whether this strategy would be acceptable to persons who had experienced a family member who died with advanced dementia. Our hypothesis was that the participants would be willing to make an advance directive specifying that they would not want to be given food and liquids in at least 1 condition shown by the selected cards.15
Methods Patients About 177 relatives of patients with dementia who died between 6 and 12 months ago in a hospice were contacted by phone and asked whether they would be interested in participating in a research study investigating a new approach to advance directives. In all, 27 were interested and received informed consent forms by mail, but only 15 actually attended 1 of the 2 focus groups: 12 spouses (4 husbands and 8 wives), 2 daughters, and 1 son-in-law. The study was approved by the Institutional Review Board of the University of South Florida.
Procedure The focus groups were led by the 2 authors. They greeted the participants and introduced themselves and the participants. The purpose of the meeting was explained as being a discussion about prevention of premature dying (Janet Adkins) and murder/suicide tragedies. Participants were asked to remember what their experiences were when their family members were dying (about 45 minutes). The second topic was a discussion about their advance directives and the ability of these directives to prevent a prolonged dying with advanced dementia (about 15 minutes). This was followed by a description of the ‘‘Natural Dying’’ strategy13 that included the following main principles: a. No life-sustaining treatment whose goal is to try to keep you alive. b. No food or fluid by tube or by another person’s hand to assist oral feeding and drinking when the person cannot eat and drink by themselves. However, food and fluid
will always be placed near the person to allow him or her to eat and drink–if he or she can without help. c. All needed comfort care would be provided, especially including agents to control dryness of person’s mouth. Following this, 9 cards from the total of 48 Natural Dying Living Will Cards15 describing conditions that may occur in advanced dementia were presented. We selected cards that showed severe conditions that we considered likely to be unacceptable to the study participants. The participants discussed each card and then were asked whether they would want to be given food and liquids if they were in that condition and could not eat by themselves. Show of hands was counted for Yes, No, and Unsure. After this discussion, participants were asked whether they would be comfortable making the decision to stop administration of food and liquids for their family members who they believed would rather die instead of living with advanced dementia and did not have advance directives specifying this option. Participants were also asked whether the advance directive specifying the food and liquids should not be administered, should be disregarded if the person indicates verbally, or nonverbally indicates that he or she does want such help. Finally, they were asked whether the ‘‘Natural Dying’’ strategy would be in conflict with their religious beliefs (about 1 hour). The focus group discussions were recorded, transcribed, and analyzed by QDA Miner 4 Lite v 1.0.2 program (Provalis Research, Montreal, Canada). Several codes were developed according to topic of this research and participants’ responses and used to mark passages of transcriptions. Coded sections were combined according to the codes, and representative quotations were used for preparation of the manuscript.
Results Results are presented as representative statements of focus groups’ participants related to specific topics. The comments are indented to distinguish them from the text and are organized according to codes used in QDA Miner 4 analysis. The initial codes were selected according to the topics of research and were further subcategorized according to responses. Additional codes were added according to responses, for example, acceptability of this advance directive to health care providers.
Experiences With Advanced Dementia Impact on person with dementia. One of the reasons why people fear dementia is that they are afraid of suffering. Therefore, we asked our participants whether they felt that their family members suffered. One participant reported that her husband was aware of his deficit: I think my father knew. He would say things like ‘‘I just cannot get my thoughts together’’ but the saddest thing was one day coming in (He was always watching the news, he stopped reading the paper), he was just staring in space. And I asked, What are you doing? And he said I am just trying to put my thoughts together. That’s when he expressed to me that he is just losing ideas.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
3
However, others felt that their husbands were not aware of the deficit: I asked him one day, we had breakfast, and I said ‘‘Bud, are you afraid because your mind is not exactly right?’’ And he looked square at me and said ‘‘Not at all’’. So I am not so sure how much they realize what is happening with them.
Some participants also reported physical suffering their family member had before death, despite being involved in a hospice program: Another pneumonia which happened in 2010 took all his strength away, couldn’t walk anymore and once he could not walk we had problems with the pressure sores, he was a skinny guy . . . Pressure sores would start healing and something would happen and then get worse and we would go to a Stage 4 ulcer in a week and he would get another one on the other side My husband suffered at the end because he was chewing and eating himself.
Family members of 3 of our participants refused food and liquids before they died. Two of them died at home and the other in a hospital. All felt that the persons with dementia experienced a good death: So with my wife it was almost a natural progression. I kept her at home. When she stopped eating she still drank water and I gave her baby food, she ate that for couple of days. I gave her nectar juice and she lasted another week and a half . . . and then she went into coma and in three days she was gone. We both had advance directives not to feed if there is no quality of life left, no artificial means of any kind, no force feeding. My wife was quite advanced within the last two weeks she would take so little, she could not sustain herself. Three days before we went to hospice she would not take anything. She would fight; she would not swallow a thing, nothing.
Keeping people alive is not because it is best for them but because it is best for us. My husband at his end, for months, I could still touch him, I could put my arm around him, I could get in the bed with him. And I told a nurse, it means a lot to me. I do not know if it means anything for him. ‘‘And it means a lot for him too,’’ she said. We cannot let go.
Family members of 3 of our participants refused food and water before they died. Although all of them felt that they experienced a good death, they still had problem during the last days: The last three days were the worst for me, watching her starve to death. It happened two years ago and I am just getting the image out of my head.
Another burden that the caregivers experienced was the need for making decisions about medical care for their family members: I was in a position to decide is he at the end stage or should he still have some intervention. This was really hard, because his vital signs were OK, he still recognized us, we could still have some conversation even though he repeated himself a lot, he was not all there. He needed help since he was incontinent. So end stage for him was that he started to develop an infection, he is 90 now. They did give him high doses of antibiotics at his assisted living facility but we decided not to send him again to the hospital because every time he went for bowel impaction he came back one step down. You know, then he was not walking. But we decided to send him one more time, because it was an infection may be we can hit it, really hard. Gastroenterologist told us he has an abscess in the liver that we can treat easily, and it was treated but he died anyway.
Current advance directives. We asked the participants whether their relative had advance directives. Almost all had some. Most of them considered only aggressive medical interventions and some of them were not made after thorough discussion of alternatives:
Impact on the caregiver. Another reason why people fear dementia is that they do not want to be a burden for their family members. Therefore, we asked our participants whether they had bad experiences during their caregiving. Some of them reported:
The doctor came in and he said to me ‘‘Mrs. Doe would you consider a feeding tube?’’ I stopped and said ‘‘No’’ and he said ‘‘would you consider resuscitation?’’ and I said ‘‘No’’ and had me sign a paper and that was as smooth as smooth can be.
I would be out in the front yard at 3 a.m. because my husband never slept so he was out all over the place and I can remember sitting there crying because everybody else was asleep in the neighborhood and I was out.
Our participants reported that they were contacted about some interventions, such as tube feeding and transfer to a hospital, and were able to select palliative care at that time:
My husband fell all the time; all my friends said ‘‘all you have to do is call 911’’. I said, I would have 911 here every hour and half, I cannot do that. I rely on my grandson. I tried as hard as I could and every way, I could not get him up
He aspirated. A nurse called me and he had pneumonia. I said go ahead give him antibiotics and see if it works. She called and said it does not work. ‘‘Do you want him in a hospital.’’ I was actually out of town. I said ‘‘No do not put him in the hospital, his time has come. We talked about it.
However, others felt that caregiving had a meaning for them and that they wanted the person with dementia to live as long as possible:
She was not able to swallow [in a hospital]. Well, when she was at home she was eating OK, so they wanted to know if I want a feeding tube inserted and I said ‘‘No, let me bring her home.’’
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
4 Table 1. Responses of Participants to Selected MY WAY Cards.a Text of the card
Forgetting life-long ideals. The way I act shows that I forgot my lifelong ideals. If I could see my future actions now, I would feel shame and I’d feel sorry since my actions would hurt my husband or my wife, and others, like children. Inability to communicate. I cannot say or show what I want by using words, moving my hands, or changing the look on my face. Severe pain. I have severe pain. But I cannot say what bothers me. Doctors don’t see my pain. They do not treat my pain Recognition of others. When I see people in my close family or see my best friends, I do not know who they are Incontinence. I do not use bathrooms. I let my clothes get wet and dirty. Others must change my diapers (nappies) Apathetic state. Almost all the time, I stay very quiet by myself. I look very sad. I have no interest or energy to do anything. I cannot share joy or have fun with others Intensive medical care. To keep me alive, others must take care of me and watch over me almost all the time night and day Cost of care. My care costs a lot of money. I won’t get better. I’d rather use my savings to help my family. For example: to send my grandchildren to college Difficulty eating. I cannot eat in the usual way. I forget to swallow so food stays in my mouth. Helpers place very soft food at the back of my tongue so that I swallow by reflex. This is forced-feeding
Would want natural dying
Would not want natural dying
Unsure
7
8
0
13
2
0
15
0
0
15
0
0
8
7
0
10
3
2
10
3
2
6
8
1
15
0
0
a For descriptions of pictures of the cards see text. The responses indicate if participants would or would not make advance directive for themselves indicating that they do not want to be fed and given liquids if they were in this condition.
However, 1 participant reported that she has a living will that would eliminate food but continue provision of liquids: I think that’s what my living will says, ‘‘No food but water’’ and the reason is, my mother broke her hip, she had a stroke, massive stroke and she was totally gone, and she would choke to death, we were afraid some nurse would come to feed her and she would choke to death. So she did not get any food but she got fluids, and she had very quiet, peaceful death.
Responses to natural dying presentation. The whole concept, described in the Method section, was well accepted by study participants: This is good because it is addressing the next thing ‘‘no food, no water’’ because most advance directives do not address this at all. If you cannot do it, be it mental or physical, where do you draw the line? Even if you had discussion, even if it is in writing it is still hard. Well it’s the same thing as life support, whether you want to be on a life support, it is a different type of support. I think it is great. It just takes burden from anybody else. That is what advance directives are supposed to do. You get to decide and not burden somebody else with that decision. I wished I knew this. I would not probably have had him fed. Because to me he was suffering.
administration of food and liquids. Wording of each card is listed in Table 1. Each card also had a graphic depiction of the described condition. After each card presentation, we discussed it and we asked how many would select not being fed and given liquids. The choices were Yes, No, and Unsure, and number of respondents for each card is shown in Table 1. Forgetting lifelong ideals. The card shows a couple in bed with a visitor being surprised by seeing them together. Seven of the participants would select not being fed and given liquids if they were in this condition: Me, I would not want to live like that
While 8 did not feel this condition would be bad enough for Natural Dying: Well she had a good time, I think it is great: men and women sitting together and holding hands, like Sandra Day O’Connor’s husband, he had relationship with somebody else and she said it was great, I would say so too.
Inability to communicate. The card shows a person in a wheel chair saying words that are unintelligible. This condition was considered a reason for not being fed and given liquids by 13 of the 15 participants:
Presentation of Natural Dying Living Will Cards
I would not want to be there. Nope. Why should I be alive?
We selected 9 cards of the total 48. These cards presented conditions that may be considered good enough reasons to stop
Some people want to live under any circumstances. And some of us do not want to live like that.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
5
I would be a burden on my son and daughter and two grandkids, I would not want to live like that. So, this is a good point, I would not want to live like that.
Severe pain. The card shows a person in distress sitting on a bed with a physician in front of him, holding chart and being confused (question marks around his head). Thirteen of the participants would prefer not being fed and given liquids in this condition instead of continuing administration of food and liquids. If I am a vegetable and if I am not gone before that, somebody is not doing their job. When I am over, I want to be gone. What I mean if I cannot be myself any more. All these pertain to me.
Recognition of others. The card shows parents with 2 children visiting their grandfather who does not recognize them. Thirteen of the participants would prefer not being fed and given liquids in this condition. I would not want to live like that.
Intensive medical care. The card shows 2 staff members walking quickly past an open door of a patient’s room where somebody worried is sitting by the bed. It suggests need for round-theclock care. Of the participants, 10 would not want to live like that, while 2 others were unsure. Most comments were about being unsure or accepting this condition. See, if you not in any pain and you are not uncomfortable and the makeup of your personality is not causing any problem and the nurses are nice to you and give you good care, there is no problem. A nurse came to our house when we were thinking about 24 hour care at the house. At that point, I was basically crawling on my knees, my husband was going down, and I remember what she said ‘‘Somebody has to come out of this alive’’ I would not want to live like that, . . . . I would probably say, ‘‘No,’’ but it is not specific enough.
Cost of care. The card shows a person in bed thinking about the graduation of young people. Only 6 participants stated that they would not want to live like that and 1 was unsure.
It was just the last 3 or 4 months when he would just stare in the space, I would stop it.
If my husband knew how much it cost, he would be dumbfounded.
That’s not living.
But when that time comes, what is the problem? Financially, for me it was not a problem, I kept her at home.
Incontinence. The card shows a nurse changing ‘‘Depends/diapers’’ of a patient who is lying in bed. Of the 15 participants, 8 felt that they would not want to live in that condition and prefer not being fed and given liquids. No way, that’s awful.
If I am aware why would they not feed me?
Difficulty eating. The card shows a person in bed being fed by a spoon with food dripping out of his mouth. Of the 15 participants, 13 felt that they would not want to live this way and would prefer not being fed and given liquids.
It is the most demeaning thing. It is horrible. Only if the nurse was good looking. [JOKE]
Others felt they could live with it: I would accept that. I would not like it. I would not like it. Looking back at my mother and husband again, I do not think it bothered them.
Apathetic state. The card shows a person sitting in a wheelchair oblivious of a celebration going on in the room (possibly birthday party). Ten of the participants would not want to live like that while 2 were unsure. Yes, no that’s part of the dementia, nobody wants that dementia because that’s what you end up like. Yes, that’s not living to me. If there is no expectation of change. That could be a temporary situation, especially if you had a pretty nurse. I am not sure.
Decision by a Proxy Focus group participants were asked whether they would be willing to stop providing food and liquid to somebody who did not make an advance directive specifying that he would rather not prolong his dying by being fed in a condition of advanced dementia and who they believed would want to die instead of living with advanced dementia. Some of them felt that they would be able to do that: I do not know. I might because when he began chewing himself, I probably would be able to. Maybe not earlier but at that point. I think so, because I was shocked a little bit and then I started thinking: she just let him go peacefully. It took him two weeks but he went peacefully. I am an advocate for telling people, but a lot of people do not think about what you’re going to do when you die. Or before you die, they are not facing that they are not going to be here forever. It just boggles my mind. I would not mind for my daughter to make that decision (for me) because I feel that she would do what would be best for me. [Daughter agrees]
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
6 However, others felt that they were unsure if they could make this decision: I do not know if I could make that decision because I was not ready to lose him. Well, I mean he would never be force-fed, I do not know if I could make that decision. Or felt that making such a decision would put too much guilt on the decision maker. No, I would not do that, that would put too much guilt on them. However, one participant reported that withdrawal of food and liquids may be already done informally when the person is being cared for at home: You know there was a person . . . I think she make a decision not to feed her husband. He lasted two weeks. I talked to her afterwards and she said that he could not feed himself anymore and she made a decision not to feed him.
Other Issues The participants were asked if an advance directive that includes stopping administration of food and liquids would be unacceptable because of their religious beliefs. All of them said ‘‘No’’ to this question. You know, if we just let nature, God or force, had its way we would die, we are interfering with a natural process.
Another issue that was raised was how they would respond if a person who had an advance directive which specified that he does not want food and liquids in his condition but then indicates verbally or nonverbally that he wants help in eating or drinking. Everybody indicated that such a person should receive help with eating or drinking if he or she asks for it, although it is against the wishes he expressed in his advance directive. If I pointed to something and an aid would see if I want a little and help . . . you have to try if they are pointing.
Acceptability by Health Care Providers Although this study was not designed to determine how advance directives specifying withdrawal of administration of food and water would be acceptable by health care providers, we obtained some evidence that in some settings (especially hospice), this advance directive would be honored: Hospice came to [assisted living] twenty-four hours each day . . . he was not given food or water, although his directives said water. I had a regular [hospice] team but at the end of life they sent a different team specializing in that. But that was only for two days. But before they came they gave food and water. But after they came, they gave him nothing.
Discussion The results of this study indicate that an advance directive specifying withdrawal of food and water at a certain stage of dementia would be acceptable to individuals who experienced their family members dying with advanced dementia. The stage of dementia at which these directives should be implemented differed, but all participants found at least 1 condition in which they would prefer to die by dehydration instead of being provided food and liquids by another’s hand. The conditions that all focus group participants would not want to live with included severe pain, inability to recognize family or best friends, and being force-fed. Pain is usually not caused by dementia itself, but many persons with dementia also have other conditions that can cause pain, for example, arthritis, old fractures, neuropathy, and malignancy.17 Perception of pain may be expressed nonverbally and several scales were developed to help in recognition of pain in advanced dementia.18 However, it is possible that in very advanced dementia, persons’ cognitive state is such that they perceive pain but are unable to communicate they are suffering in any way. There is an indication that this may be happening in patients who are in minimally conscious state (MCS). Positron emission tomography imaging in these patients showed that their brain activity in response to electrical shocks was similar to brain activity in healthy individuals, but they did not manifest reliably behavioral signs of pain.19 Although there is some evidence that patients with Alzheimer’s disease do not progress into a persistent vegetative state,20 they may reach MCS. Another condition with which our participants would not want to live was inability to recognize family and friends. That is somewhat surprising because persons with advanced dementia may enjoy company of others even when they do not recognize them.21 However, this opinion probably reflects experiences of our participants who became very upset when their family members became unable to recognize them. The third condition in which our participants would not want to live was forcefeeding. The reason for this opinion was reports of several participants whose family members stopped eating and drinking and had a peaceful death. It was reported that death of persons who stopped eating and drinking is more peaceful than death of persons who committed physician-assisted suicide9. Persons who stopped eating and drinking die of dehydration in which the main discomfort is caused by dryness of the mouth. Our participants felt that an advance directive specifying food and liquid withdrawal should not prevent providing help with eating and drinking if the person with dementia asks for it or indicates nonverbally that it is desired. This is in agreement with the general principle that a person can always change his or her mind and revoke advance directives. It is possible to argue that persons with advanced dementia do not have the capacity to make this decision, but decision-making capacity depends on the nature of the decision and persons with dementia may be able to make simple decisions, for example, which clothes to wear. They certainly are able to stop eating and drinking as several of our participants reported. Therefore, they
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
7
may also have the capacity to revoke their previous decision about food and liquid withdrawal and indicate that they want help. However, it is possible to argue that their current decision does not take into consideration some of the reasons for which they made their advance directives and which they can no longer appreciate. The protocol of substituted judgment allows proxies of persons who lost their decision-making capacity to make decisions regarding their treatments.22 Thus, it is possible to propose that proxy could make a decision that a person with dementia who is unable to feed himself or herself should not be given food and liquids. However, ability of proxies to make some decisions is sometimes limited; for example, refusal of tube feeding in New York State requires clear evidence that the person would not want it. Similar limitations may be imposed on a proxy’s decision about providing oral intake for a person who is unable to eat and drink unassisted. The proxy may have a conflict of interest and make this decision earlier than the person with dementia would want. There would be a need for some safeguards before such a decision would be accepted. Our focus group participants were divided; some of them felt that proxy decisions to stop providing food and liquids would be appropriate and some of them felt that they could not do it because they would not want to lose the family member or would feel too much guilt in making such a decision. All participants in our focus group stated that an advance directive that would include withdrawal of food and liquids would not conflict with their religious beliefs. We did not ask about their religious affiliation, but this advance directive would not be acceptable to some Catholics who would consider handfeeding an ordinary treatment that should be always provided. However, continued hand-feeding could extend the condition of a person whose advance directive found it unacceptable. Thus, a principle of double effect could be invoked, suggesting that stopping food and liquids is done to prevent continuous suffering by providing a comfortable death by dehydration. Most research studies about terminal dehydration concluded that dehydration is not causing discomfort beyond dryness of the mouth that can be easily managed by ice chips or artificial saliva spray.23 If both food and liquids are stopped, dehydration is isotonic and causes less thirst than hypertonic dehydration that occurs only when the intake of food is discontinued.24 Dehydration may make dying more comfortable by limiting secretions in the respiratory and gastrointestinal system, decreasing the need for suctioning and risk of vomiting and diarrhea. Decreased urine production may be also beneficial in incontinent individuals because it results in less irritation of the skin.23 Dehydration causes release of vasopressin and there is some evidence that endorphins are coreleased decreasing the perception of pain.25 Another mechanism by which stopping intake of fluids and food may increase comfort is through increased formation of ketone bodies.26 Ketones increase formation of g-amino butyric acid, which is the main inhibitory brain neurotransmitter and which decreases the risk of seizures.27 Our study has some limitations. Participants in our focus groups were family members of persons who died with
advanced dementia. We selected this population because they may best evaluate the burdens of advanced dementia and acceptability of food and liquid withdrawal. However, because of this selective population, our results may not reflect the opinions of society at large. Our study included small number of participants from 1 geographic area and the responses may be different in other areas of the country. It is also possible that potential participants who refused to participate would have different opinions about the acceptability of food and liquid withdrawal. Another limitation is that our study did not evaluate a procedure for preparation of an advance directive that limits administration of food and liquids, as proposed by Terman.15 We used only 9 cards to illustrate conditions of persons with advanced dementia which we considered likely to be unacceptable to the study participants and asked only for decisions regarding these specific conditions. Terman’s procedure is to use all 48 cards that are sorted into 3 categories, Treat and Feed, Enough suffering by itself for Natural Dying, and Natural Dying with other items or severe enough—as determined by the proxy. Thus, the person specifies conditions that are definitely acceptable, conditions that are definitely not acceptable, and conditions that may be considered unacceptable when combined with others. As we did not provide the third option, some participants were unsure how to answer some cards. Some of them also reported that the card depicting apathetic behavior was not descriptive enough because this behavior could be caused by lack of meaningful activities or untreated depression. However, the cards provide better guidance than just description of different stages of dementia.14 We used only 9 cards because using more of them would be difficult in a group situation. Our study also did not assess the acceptability of advance directives that stop help with feeding and drinking by health care providers. A court decision was required to force High Desert Hospital to honor request of Ms Bouvia that she not be fed through a tube which would result in her death.28 Stopping giving fluids and liquids to an individual who can still swallow may be more controversial. However, participants of our focus group reported that hospice programs were quite willing to stop administration of food and liquids to individuals who were refusing feeding. Whether or not they would be willing to stop feeding individuals who would accept feeding but have advance directives specifying that the feeding should be stopped remains to be established. Advance directives are not always honored29 and if they are more controversial, they may be followed less often. Health providers may raise a question about capacity of the person who made advance directives, but this could be obviated by video recording the person during decision making, as proposed by Terman.13 Future research is needed to investigate whether these advance directives would be acceptable in other areas of the country and whether health care providers would accept them. It can be expected that only a small number of individuals would make these advance directives because even traditional advance directives are made by only small number of people. Bigger impact on care for people with advanced dementia would be acceptance that decision to stop giving food and
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
American Journal of Hospice & Palliative Medicine®
8 liquids can be made by a proxy. However, this policy decision would require safeguards to prevent proxy from making this decision based on financial or other unacceptable reasons and requires further investigation. Another issue to investigate is whether food and liquids should be placed in front of a person who specified in advance directives that he or she does not want to be fed. That would prevent a situation in which the person can indicate that he or she wants help with eating or drinking that would override advance directives. If a person wanted to be completely sure that he or she will not live beyond this specified state, he or she would have to include in the advance directives statement that at that state, food and liquids should not be offered. Putting food and liquids in front of the person who cannot use them himself or herself provides opportunity for revocation of the advance directive but could also be considered cruel if the person does not change his or her mind. In conclusion, advance directives that would stop help with feeding and drinking are acceptable to people who experienced a family member dying with dementia in our geographic area. Conditions which they would specify in advance directives as reasons for stopping food and liquids included severe pain, inability to recognize family or best friends, and being forcefed. Availability of these directives may decrease fear of living with advanced dementia in persons with this diagnosis and prevent premature suicides. These directives may also prevent suffering with advanced dementia that may lead to murder/ suicide. It remains to be established whether these advance directives would be acceptable to general population and whether health care providers would honor them. Acknowledgments We would like to thank hospice volunteer Caroline Barner for contacting the possible study participants and her hospice organization for providing list of these participants. Dr Terman was involved in design of this study and provided a recording device, but he did not comment on the results or conclusions before we submitted them. We would like to thank all study participants for their participation. We thank Dr Terman for providing recording equipment.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
References 1. Norton S, Matthews FE, Brayne C. A commentary on studies presenting projections of the future prevalence of dementia. BMC Public Health. 2013;13:1. 2. Alzheimer’s Association. 2014 Alzheimer’ Disease: Facts and Figures. 2014. http://www.alz.org/alzheimers_disease_facts_and_figures.asp. Accessed October 6, 2014.
3. James BD, Leurgans SE, Hebert LE, Scherr PA, Yaffe K, Bennett DA. Contribution of Alzheimer disease to mortality in the United States. Neurology. 2014;82(12):1045-1050. 4. Craig K. Dementia second leading cause of death in women. http:// www.fightdementia.org.au/dementia-second-leading-cause-ofdeath-in-women.aspx. Accessed March 25, 2014. 5. Channel 5 news poll. People fear dementia more than cancer. http://www.itv.com/news/2013-12-10/dementia-replaces-canceras-disease-people-fear-most/. Accessed March 25, 2014. 6. Simard J. The End-of-Life Namaste Program for People with Dementia. 2nd ed. Baltimore, London, Sydney: Health Professions Press; 2013. 7. Associated Press. Dementia led to Pa. couple murder-suicide. http://abclocal.go.com/wpvi/story?section¼news/local&id¼8601 495. Accessed March 25, 2014. 8. Volicer L. Palliative care in dementia. Prog Palliat Care. 2013; 21(3):146-150. 9. Alzheimer’s Disease and Related Disorders Association. A statement by the Alzheimer’s Association regarding the suicide of Alzheimer patient Janet Adkins. Issues Law Med. 1991;7(3): 379. 10. Humphry D. The tragic dilemma of Alzheimers. http://www.youtube.com/watch?v¼_jHcVEhZc_Y. Accessed November 19, 2011. 11. Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med. 2003;349(4):359-365. 12. Meisel A. A fading decision. Hastings Cent Rep. 2014;44(3): 14-16. 13. Terman SA. Peaceful Transitions. 2nd ed. Carlsbad, CA: Quality Books, Inc; 2011. 14. Menzel PT, Chandler-Cramer MC. Advance directives, dementia and withholoding food and water by mouth. Hastings Cent Rep. 2014;44(3):23-37. 15. Terman SA. Natural Dying Living Will Cards. Carlsbad, CA: Life Transitions Publications; 2009. 16. Dresser R. Toward a humane death with dementia. Hastings Cent Rep. 2014;44(3):38-40. 17. Ferrell BA, Ferrell BR, Rivera L. Pain in cognitively impaired nursing home patients. J Pain Symptom Manage. 1995;10(8):591-598. 18. Volicer L. Do we need another dementia pain scale? J Am Med Dir Assoc. 2009;10(7):450-452. 19. Boly M, Faymonville ME, Schnakers C, et al. Perception of pain in the minimally conscious state with PET activation: an observational study. Lancet Neurol. 2008;7(11):1013-1020. 20. Volicer L, Berman SA, Cipolloni PB, Mandell A. Persistent vegetative state in Alzheimer disease - does it exist? Arch Neurol. 1997;54(11):1382-1384. 21. Cohen-Mansfield J, Marx MS, Dakheel-Ali M, Regier NG, Thein K, Freedman L. Can agitated behavior of nursing home residents with demenia be prevented with the use of standardized stimuli? J Am Geriatr Soc. 2010;58(8):1459-1464. 22. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 3rd ed. New York and Oxford: Oxford University Press; 1989. 23. Jackonen S. Dehydration hydration in the termially ill: care considerations. Nurs Forum. 1997;32(3):5-13.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
Volicer and Stets
9
24. Billings JA. Comfort measures for terminally ill: is dehydration painful? J Am Geriatr Soc. 1985;33(11):808-810. 25. Bondy CA, Whitnall MH, Brady LS, Gainer H. Coexisting peptides in hypothalamic neuroendocrine systems: some functional implications. Cell Mol Neurobiol. 1989;9(4):427-446. 26. Akram M. A focused review of the role of ketone bodies in health and disease. J Med Food. 2013;16(11):965-967. 27. Yudkoff M, Daikhin Y, Mela TM, Nissim I, Sonnewald U, Nissim I. The ketogenic diet and brain metabolism of amino acids:
relationship to the anticonvulsant effect. Annu Rev Nutr. 2007; 27:415-430. 28. Bayley C. The case of Elizabeth Bouvia: a strain on our ethical reasoning. Health Prog. 1986;67(6):40-47. 29. The SUPPORT Principal investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). JAMA. 1995;274(20): 1591-1598.
Downloaded from ajh.sagepub.com at MEMORIAL UNIV OF NEWFOUNDLAND on January 30, 2015
