Research
End-of-life care perspectives of patients and health professionals in an Indian health-care setting Ranjitha Chacko, Jasmin Ruby Anand, Amala Rajan, Subhashini John, Vishalakshi Jeyaseelan
T
he diagnosis of cancer marks the beginning of a patient’s journey of uncertainty, fear and hope. The patient is faced with confounding issues around treatment options, decreased quality of life and often end-of-life decisions. The concept of good death has gained importance in western literature since the mid 1980s and improving care at the end of life has come under increased scrutiny. Despite a recent increase in the attention given to improving endof-life care, our understanding of what constitutes a good death is lacking (Steinhauser et al, 2000b). Advance care planning has become an integral element of medical care and has become a legal requirement in many parts of the western world. Benefits may include more consistent supportive care, fewer emergency hospital admissions and better resolution of caregiver bereavement.
© 2014 MA Healthcare Ltd
Background There is a lack of evidence regarding end-of-life care services available in India. Despite the concept of patient independence being included in medical and nursing education, it is often undermined owing to the paternalistic nature of medical and nursing care in India. Advance directive is a difficult issue in Indian health care where, because of the poorly developed social security and health insurance system, most of the decisions are made by the patient’s family. Palliative care facilities are not available in most parts of India, and there is no national palliative care policy, which makes good end-of-life care taxing (McDermott et al, 2008). Lack of resources, illiteracy, poverty and ignorance about available health care make developing end-of-life care services a major challenge in India (Shanmugasundaram et al, 2006). On the topic of end-of-life care, Kübler-Ross (1969) stated: ‘He may cry for rest, peace, and dignity, but he will get infusions, transfusions, a heart machine, or tracheotomy if necessary’
International Journal of Palliative Nursing 2014, Vol 20, No 11
Abstract
Aim: This descriptive study set out to explore the end-of-life care perspectives both of patients with advanced carcinoma and of health-care professionals in a tertiary health-care setting in India. Method: A descriptive approach was undertaken to assess the end-of-life care perspectives from a sample of 140 patients and 40 health-care professionals. Data was collected through structured interviews with the patients and by self-administered questionnaire from the health-care professionals. Results: There was a significant association in attitudes to artificial prolongation of life with age and religion. Patients placed a higher degree of importance on emotional, social, physical and spiritual dimensions of care compared to the health-care professionals. Conclusion: There is an urgent call for formulating an end-of-life care policy and advance directives for patients with terminal illness in India. Nurses and physicians should be proactive in offering key supportive services to ensure patient autonomy and facilitate good death. Key words: End of life l End-of-life care l End-of-life perspectives l Health-care professionals l Advanced carcinoma This article has been subject to double-blind peer review.
These words highlight the importance of research into end-of-life care preferences. This study aims to explore the end-of-life perspectives both of patients with advanced carcinoma and of Ranjitha Chacko, Junior health-care professionals in a tertiary health-care Lecturer, College of Nursing, Medical setting in India.
Methods
Design, sample and setting A descriptive comparative approach was undertaken to assess end-of-life care preferences. The study was conducted in the inpatient and outpatient units of the radiation oncology department of Christian Medical College, Vellore, India. The study used a sample of 140 patients and 40 health professionals. Patients had stage III or stage IV solid or soft tissue tumour. All patients were aware of their cancer status and had been undergoing radiation therapy or chemotherapy for a minimum of two cycles. Data was collected from patients via structured interview. Self-
Intensive Care Unit; Jasmin Ruby Anand, Professor, College of Nursing, Radiation Oncology Unit; Amala Rajan, Professor, College of Nursing, Medical Nursing Department; Subhashini John, Professor and Head of Department Radiation Oncology; Vishalakshi Jeyaseelan, Biostatistician, Christian Medical College, Vellore, India Correspondence to: Ranjitha Chacko ranjithachacko@gmail. com
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Research
Table 1. Distribution of patients based on socio demographic variables (n=140)
Procedure for ethical approval
Number
Percentage
20–25 years
0
0
25–35 years
12
8.6
35–45 years
39
27.9
45–55 years
45
32.1
55–65 years
30
21.4
65 years and above
14
10.0
Permission to perform the study was obtained from from the Institutional Research Committee of the Christian Medical College, Vellore, India. Written consent was given by all participants. The patient questionnaire was administered ensuring adequate explanation and clarification and considering the educational level of the patients in the preferred language. Patients were each afforded adequate time and privacy to answer the questionnaire.
Male
68
48.6
Data analysis and interpretation
Female
72
51.4
Unmarried
4
2.8
Married with children
116
82.9
Married without children
8
5.7
Divorced
0
0
Widowed
12
8.6
Christian
27
20.0
Hindu
98
69.3
Muslim
13
9.3
Other
2
1.4
The socio-demographic preferences and clinical variables were analysed using frequency and percentage. Perceived importances of various dimensions of care were divided into unimportant (0–50%), moderately important (50.1–75%) and extremely important (75.1–100%), as shown in Figure 1 and Figure 2. Item analysis was also carried out for each question. The relationship between perceived importance of care, sociodemographic variables and clinical variables was assessed using Chi-square/Fischer’s test, with a P value of 0.05 being considered significant. Comparison of the patients’ and the health professionals’ perspectives was done using Cohen’s-Kappa.
Variables Age
Gender
Religion
Socio-economic scale (Kuppuswamy Score) Lower–Lower
10
7.1
Upper–Lower
48
34.2
Results and discussion
Lower–Middle
39
27.9
Upper–Middle
39
27.9
Upper
4
2.9
This section discusses the results in the light of investigators’ interaction with the patients during the interview process and literature review. Of 169 eligible patients who were approached, 140 patients could complete the survey. Patient characteristics are shown in Table 1 and Table 2.
administered questionnaires were undertaken by health-care professionals, including physicians and registered nurses.
Description of the instrument The end-of-life care survey for patients (modified from Davison, 2010) contained details of sociodemographic profile, clinical variables and a questionnaire arranged in 2 parts: a) 18 questions about the importance of emotional, social, physical and spiritual dimensions of end-of-life on a rating scale of 0–4; b) 12 multiple-choice questions on end-of-life care preferences. The questionnaire for health professionals had a similar structure and was modified from the same origional source (Davison, 2010) with advice from experts in nursing, psychology and medicine. The Content Validity Index score was calculated as 0.94. The instrument was translated into selected vernacular languages and later retranslated back to English and compared for semantic, technical and content equivalence.
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Emotional and social dimension Most patients (74.3%) disclosed that discussing fear and anxiety is extremely important. Some 84.3% patients considered talking about quality of life with their health team at regular intervals, as very important, as shown in Figure 3. Some subjects (2%) felt that discussing poor prognosis could have a negative effect on their psychological wellbeing. A frequently encountered comment was that clinicians revealed the prognosis to the care giver but not to the patient, as it may psychologically affect the patient unfavourably. Patients who belonged to the older age group, with family commitments wanted to know how long they could live. One respondent said: ‘I want my daughter to get married and get her settled in life. Please tell me whether you can help me to live till then?’
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Marital status
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Research
Some younger patients expressed an element of disbelief and anger at their diagnosis and questioned the credibility of diagnosis. Some patients tried rationalising that they did not have any bad habits. One recurrent question that the investigator faced from almost all the subjects was
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‘Why did this thing happen to me?’
Although 65% of patients favoured family members and friends for emotional and social support, 23.6% of patients preferred physicians and 4.3% favoured nurses (Table 3). Patients also acknowledged that the doctors and nurses may be too busy to address these issues and quoted this as a barrier to discussing these issues with them. Leydon et al (2000) and Escobar Pinzón et al (2010) produced similar results. Around a quarter of patients (23.6%) expressed their lack of understanding of treatment options and felt unable to engage in intellectual conversation with the health team, especially physicians, on this topic. These patients adoped the attitude of ‘the doctor knows what is best for me’. Although the physician’s information was considered credible, most patients wanted a nurse to explain and reiterate the process again in detail and in simpler terms. Patients regarded physicians as a reliable source of information (81.4%) compared to nurses (10.7%) (Table 3). They felt that nursing care was inconsistent because of the lack of coordination between nurses in different shifts and the lack of a primary care nurse. In addition, many nurses did not have time to listen to patient concerns or satisfactorily answer their queries, similar to the findings of Rutten et al (2005). The study showed that 90.7% of patients gave extreme importance to financial arrangement (Figure 3). Many of them felt that they were a financial burden on their family. Loss of employment, personally or of a family member, and consequent loss of income was a major source of concern. Two patients expressed that they had considered ending their lives, because they did not want to be a burden anymore. Some patients were opposed to expensive therapy because of the economic affliction and most of the patients (85.71%) felt the need for financial assistance to bear the treatment expense. Female patients also discussed the fear that their spouse might abandon them. Presence of family members during the illness was rated as highly important by 88.6% of patients, as shown in Figure 3. Some subjects (5%) felt that the presence of only close relatives was important, whereas extended relatives and neighbours could be an added stress. Involvement of family members in care was recognised as a very
International Journal of Palliative Nursing 2014, Vol 20, No 11
Table 2. Distribution of patients based on clinical variables (n=140) Variables
Number
Percentage
Head and neck
33
23.6
Brain
11
7.9
Gastrointestinal tract
17
12.1
Lung and pleura
10
7.1
Breast
32
22.9
Gynaecological
22
15.8
Urological
4
2.9
Lymphoma
3
2.1
Thymoma
3
2.1
Skin
3
2.1
Unknown primary with metastasis
2
1.4
3 years
19
13.6
Stage III
71
50.7
Stage IV
69
49.3
Chemotherapy
38
27.1
Radiation therapy
27
19.3
Combined therapy
75
53.6
Bed-ridden
1
0.7
Ambulatory with support
25
17.9
Ambulatory without support
114
81.4
0
68
48.6
1–3
46
32.9
4–6
19
13.5
7 or more
7
5.0
Type of cancer
Time since diagnosis
Stage of cancer
Type of treatment
Degree of physical dependence
Pain score
important element by 85.7% of patients. Similar results are produced by Fridh et al (2007). The need for an advance directive received mixed responses, with 60% of patients considering it to be extremely important however, 16.43% of the subjects felt that planning could be done by the treating physician and expressed their unfamiliarity with the concept and the medical issues involved. Yet others (9.3%) suggested that planning is of no consequence because of their belief in destiny, fate or God. Another constraint on planning was strikingly expressed by one patient’s remark: ‘What is the use of planning? Ultimately, my husband or son has to decide about my treat-
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Research
n Extremely important n Moderately important n Not important Need for information and communication
83.6
Need for emotional and social support
91.4
Need for symptom management
93.6
Need for artificial prolongation of life
32.1
Spiritual needs
83.6 0
15
1.4 8.5
2.1
5.7 0.7 40
27.9 12.9
10
20
30
40
50
60
70
80
90
3.6 100
Figure 1 : Distribution of patients based on their perception regarding importance of end-of-life care in various dimensions (n=140). n Extremely important n Moderately important n Not important Need for information and communication
42.5
55
Need for emotional and social support
62.5
Need for symptom management
72.5
Need for artificial prolongation of life
7.5
Spiritual needs
60 0
2.5 5
32.5
5
22.5
47.5
45
15
25 10
20
30
40
50
60
70
80
90
100
Figure 2: Distribution of health-care professionals based on their perception regarding importance of end-of-life care in various dimensions (n=40).
Advance directive is a difficult issue in Indian health care owing to poorly developed social security and health insurance; hence most of the decisions are made by the family members. Education and support of family members was an important aspect of end-of-life care for 42.1% of subjects. Patients were worried about what would happen to their loved ones after their death. One male patient said: ‘I will die soon. But my worry is that I am killing my family too in the process. My children are out of school; my wife does not even have her ‘mangalasutra’ [a sacred necklace that a Hindu groom ties around the bride’s neck,
560
which identifies her as a married woman] or good clothes. What am I doing to them? I wish I die soon.’
Modification of lifestyle bothered many patients, which required substantial family support. One patient said: ‘I am on tube feeds. My daughter, son and husband do not eat differently. They drink the same gruel that I take’.
Out of 140 patients, 73% wanted to spend their final hours at home. This finding is supported by studies across the globe (Wilson, 2000; Tang, 2003; Valante, 2004; Sanjo, 2007; Davison, 2010).
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ment. I am not the one who is paying for it.’
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Research Table 3. Relative ranking of various aspects of end-of-life care by patients and health-care professionals Attributes
Options
Number (%) of patients
Number (%) of health-care professionals
Ideal person for emotional and social support
Physician
33 (23.6)
5 (12.5)
Nurse
6 (4.3)
10 (25)
Spiritual advisor
5 (3.6)
2 (5)
Family and friends
91 (65)
20 (50)
Others
5 (3.6)
3 (7.5)
Physician
4 (2.9)
2 (5)
Nurse
7 (5.0)
3( 7.5)
Spiritual advisor
50 (35.7)
21 (52.5)
Family and friends
54 (38.6)
11 (27.5)
Others
25 (17.8)
3 (7.5)
Physician
25 (17.9)
11 (27.5)
Nurse
0 (0)
0 (0)
Spiritual advisor
2 (1.4)
0 (0)
Family and friends
108 (77.1)
27 (67.5)
Others
5 (3.6)
2 (5)
Physician
91 (65)
23 (57.5)
Nurse
9 (6.4)
0 (0)
Spiritual advisor
8 (5.7)
1 (2.5)
Any of the above
18 (12.9)
2 (5)
All of the above
14( 10)
14 (35)
Physician
114 (81.4)
27 (67.5)
Nurse
15 (10.7)
8 (20)
Spiritual advisor
0 (0)
0 (0)
Family and friends
7 (5)
3 (7.5)
Others
4 (2.9)
2 (5)
Before becoming ill
79 (56.4)
13 (32.5)
Seriously ill as defined by health team
10 (7.1)
14 (35)
Seriously ill as defined by self (patient)
9 (6.4)
3 (7.5)
Whenever need arises
30 (21.4)
8 (20)
Not needed
12 (8.6)
2 (5)
Education and support of family
59 (42.1)
9 (22.5)
Pain and symptom management
40 (28.6)
19 (47.5)
Discussing end-of-life preference
3 (2.1)
1 (2.5)
Information about palliative care
19 (13.6)
9 (22.5)
Spiritual care
19 (13.6)
2 (5)
Home
103 (73.6)
33 (82.5)
Hospice
15 (10.7)
3 (7.5)
Hospital
16 (11.4)
1 (2.5)
Religious facilities
6 (4.3)
2 (5)
Others
0 (0)
1 (2.5)
Very comfortable
59 (42.1)
4 (10)
Somewhat comfortable
27 (19.3)
17 (42.5)
Unsure
5 (3.6)
1 (2.5)
Somewhat uncomfortable
46 (32.9)
13 (32.5)
Very uncomfortable
3 (2.1)
5 (12.5)
Very comfortable
102 (72.9)
10 (25)
Somewhat comfortable
21 (15)
24 (60)
Unsure
2 (1.4)
0 (0)
Somewhat uncomfortable
12 (8.6)
5 (12.5)
Very uncomfortable
3 (2.1)
1 (2.5)
Ideal person for spiritual and religious support
Ideal person for taking medical decisions during incapacity (Power of attorney)
Ideal member of health team for discussing end-of-life care preferences
Ideal person for providing information regarding health and well-being
Ideal time for discussing end-of-life preferences
Important aspect of end-of-life care
Ideal place to spend the final hours of life
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Ease of discussing end-of life preference with health team
Ease of discussing end-of life preference with family
International Journal of Palliative Nursing 2014, Vol 20, No 11
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Research
Health professionals
Information about prognosis
Patients
42.5
71.5
Detailed explanation of medical condition
37.5
83.6
Discussing quality of life
37.5
84.3
Discussing fear and anxiety
20
74.3
Discussing various treatment modalities
35
Need for advance directives
69.3
25
60
Involvement of family members in care
50
85.7
Presence of family members
67.5
Financial arrangement
88.6
30
90.7
Symptom management
72.5
Mechanical ventilation
2.5
Cardiopulmonary resuscitation
93.6
22.1 10
36.4
Artificial nutrition
47.5
Discussing spiritual issues
50
Meeting spiritual advisors
68.6 60.7
42.5
Being able to pray
63.6 52.5
Others praying for the patient
89.3
42.5
Considering spiritual preferences while deciding about artificial prolongation
86
35 0
10
20
30
40
59.3 50
60
70
80
90
100
Percentage of subjects
Physical dimension Symptom management was considered to be extremely important by 94% of patients, which is corroborated by many other studies (Valante, 2004; Miyashita et al, 2007; Davison, 2010). Body image disturbance and sexual issues were also mentioned as a recurrent concern during cancer treatment. The investigator received diverse responses from the subjects regarding artificial prolongation of life. Artificial prolongation of life was not considered important to 40% of patients. In gen-
562
eral, patients were aware of the low success rate of mechanical ventilation and cardiopulmonary resuscitation (CPR) and were worried about added pain and unnecessary suffering. They preferred a ‘normal life’ to a ‘vegetative state’. Some 28% of patients considered artificial prolongation of life as moderately important, and thought it was important to try to preserve life but said mechanical ventilation should not be continued for ‘too long’. A significant number of patients (32.1%) ranked artificial prolongation of life as extremely important. Some believed that a mira-
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Figure 3: Percentage of patients (n=140) and health-care professionals (n=40) regarding various attributes of end‑of‑life care as ‘extremely important’ (on item analysis)
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Research
© 2014 MA Healthcare Ltd
cle would happen in their case. The study results showed significant association between the preference for artificial prolongation of life and age and religion. Younger age groups (83.3%, p=0.03), and non-Hindus (74.5%, p=0.02) gave more importance to artificial prolongation of life than the other subgroups. It was noticed that the younger patients tended to be more optimistic and wanted all lifesaving measures to be tried. These age groups were also comparatively more educated than the older age groups and they sought opinions from different health professionals regarding their prognosis. The investigator could clearly identify the stage of denial and bargaining in congruence to Kübler Ross’s (1969) stages of death. Of the age group 65 years and older, 71.5% were in favour of artificial prolongation of life. They wanted to accomplish more in life and discussed concepts such as finding meaning of life or selffulfilment before they could die. These results are supported by Abraham Maslow’s self-actualisation needs (Maslow, 1943). It is noteworthy that the investigator’s assumption about artificial prolongation of life based on the previously mentioned Kübler-Ross quote was disproved by these results, showing that there was a disagreement among patients on this issue. Many health professionals gave extreme importance to pain and symptom management (72.5%), which is similar to findings from the literature (Singer, 1999; Steinhauser et al, 2000a). Nearly half of the health professionals (47.5%) were not in favour of artificial prolongation of life. Interestingly, only 7.5% of health professionals considered artificial prolongation of life as ‘extremely important’ compared to 32.1% of patients. The subscale receiving the least support from health-care professionals was the option of mechanical ventilation, which 70% regarded as unimportant. The majority (82.5%) supported the need for life-sustaining interventions including artificial nutrition, comfort measures and palliative measures. Some health professionals were undecided about artificial prolongation of life, especially mechanical ventilation (25%) and CPR (15%). Weissman (2004) reported similarly that the physician would attempt artificial prolongation based on risk-benefit, age, clinical status and goal of treatment.
Spiritual dimension Patients placed a great deal of importance on religious rituals. Some 95.7% wanted others to pray for them; the religion of the person praying for them was not a matter of concern to them. Nixon and Narayanasami (2010), brought to
International Journal of Palliative Nursing 2014, Vol 20, No 11
light the spiritual needs of oncology patients which included supportive family relationships, emotional support, meeting religious needs, finding meaning in life and discussion of beliefs. Family or friends were identified as the most desired source of spiritual support by 38% of patients, and 35% wanted their spiritual advisors for spiritual support. Many of the patients (82.85%) wanted their physicians or nurses to have a discussion on spiritual needs, but they felt uncomfortable initiating a conversation owing to a lack of time. One patient said, ‘I acknowledge that the physicians and nurses are too busy; but please understand that cancer is a death summons, your role is to adequately prepare us for the final journey. I need medicines for my soul too. If you are not able to do it, then who will?’
❛ Feasibility in implementing advance directives in India remains a great challenge because of the poorly developed social security system ❜
Religion was not examined in depth in this study. Patients who had faith in a ‘Supreme Being’ expected a miracle to happen in their case. Some 46.4% of Hindus regarded artificial prolongation of life as unimportant owing to religious beliefs and talked about concepts of the birth-rebirth cycle, which would be altered by artificial prolongation of life. Klinkenberg et al (2004), stated that having religious beliefs was negatively associated with expressing preference for artificial prolongation of life. Christians and Muslims identified specific spiritual advisors, whereas Hindus did not do so in most cases. Health-care professionals had varied opinions on spiritual issues. Some 15% of health professionals did not consider spirituality as important, and further explained their stance by confessing that they themselves were not spiritual/religious. Just over half of the health professionals reasoned that the ideal person for patient spiritual support were spiritual advisors. In parallel with this finding, Narayanasamy and Owens (2001) and Jenkins et al (2009) reported that nurses perceived that spiritual care was not part of their realm of care. There was poor correlation between patients and health-care providers in each aspect of endof-life care analysed in this study. These included the emotional, social, physical and spiritual dimensions of care (Kappa coefficient
End-of-life care perspectives of patients and health professionals in an Indian health-care setting Ranjitha Chacko, Jasmin Ruby Anand, Amala Rajan, Subhashini John, Vishalakshi Jeyaseelan
T
he diagnosis of cancer marks the beginning of a patient’s journey of uncertainty, fear and hope. The patient is faced with confounding issues around treatment options, decreased quality of life and often end-of-life decisions. The concept of good death has gained importance in western literature since the mid 1980s and improving care at the end of life has come under increased scrutiny. Despite a recent increase in the attention given to improving endof-life care, our understanding of what constitutes a good death is lacking (Steinhauser et al, 2000b). Advance care planning has become an integral element of medical care and has become a legal requirement in many parts of the western world. Benefits may include more consistent supportive care, fewer emergency hospital admissions and better resolution of caregiver bereavement.
© 2014 MA Healthcare Ltd
Background There is a lack of evidence regarding end-of-life care services available in India. Despite the concept of patient independence being included in medical and nursing education, it is often undermined owing to the paternalistic nature of medical and nursing care in India. Advance directive is a difficult issue in Indian health care where, because of the poorly developed social security and health insurance system, most of the decisions are made by the patient’s family. Palliative care facilities are not available in most parts of India, and there is no national palliative care policy, which makes good end-of-life care taxing (McDermott et al, 2008). Lack of resources, illiteracy, poverty and ignorance about available health care make developing end-of-life care services a major challenge in India (Shanmugasundaram et al, 2006). On the topic of end-of-life care, Kübler-Ross (1969) stated: ‘He may cry for rest, peace, and dignity, but he will get infusions, transfusions, a heart machine, or tracheotomy if necessary’
International Journal of Palliative Nursing 2014, Vol 20, No 11
Abstract
Aim: This descriptive study set out to explore the end-of-life care perspectives both of patients with advanced carcinoma and of health-care professionals in a tertiary health-care setting in India. Method: A descriptive approach was undertaken to assess the end-of-life care perspectives from a sample of 140 patients and 40 health-care professionals. Data was collected through structured interviews with the patients and by self-administered questionnaire from the health-care professionals. Results: There was a significant association in attitudes to artificial prolongation of life with age and religion. Patients placed a higher degree of importance on emotional, social, physical and spiritual dimensions of care compared to the health-care professionals. Conclusion: There is an urgent call for formulating an end-of-life care policy and advance directives for patients with terminal illness in India. Nurses and physicians should be proactive in offering key supportive services to ensure patient autonomy and facilitate good death. Key words: End of life l End-of-life care l End-of-life perspectives l Health-care professionals l Advanced carcinoma This article has been subject to double-blind peer review.
These words highlight the importance of research into end-of-life care preferences. This study aims to explore the end-of-life perspectives both of patients with advanced carcinoma and of Ranjitha Chacko, Junior health-care professionals in a tertiary health-care Lecturer, College of Nursing, Medical setting in India.
Methods
Design, sample and setting A descriptive comparative approach was undertaken to assess end-of-life care preferences. The study was conducted in the inpatient and outpatient units of the radiation oncology department of Christian Medical College, Vellore, India. The study used a sample of 140 patients and 40 health professionals. Patients had stage III or stage IV solid or soft tissue tumour. All patients were aware of their cancer status and had been undergoing radiation therapy or chemotherapy for a minimum of two cycles. Data was collected from patients via structured interview. Self-
Intensive Care Unit; Jasmin Ruby Anand, Professor, College of Nursing, Radiation Oncology Unit; Amala Rajan, Professor, College of Nursing, Medical Nursing Department; Subhashini John, Professor and Head of Department Radiation Oncology; Vishalakshi Jeyaseelan, Biostatistician, Christian Medical College, Vellore, India Correspondence to: Ranjitha Chacko ranjithachacko@gmail. com
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Research
Table 1. Distribution of patients based on socio demographic variables (n=140)
Procedure for ethical approval
Number
Percentage
20–25 years
0
0
25–35 years
12
8.6
35–45 years
39
27.9
45–55 years
45
32.1
55–65 years
30
21.4
65 years and above
14
10.0
Permission to perform the study was obtained from from the Institutional Research Committee of the Christian Medical College, Vellore, India. Written consent was given by all participants. The patient questionnaire was administered ensuring adequate explanation and clarification and considering the educational level of the patients in the preferred language. Patients were each afforded adequate time and privacy to answer the questionnaire.
Male
68
48.6
Data analysis and interpretation
Female
72
51.4
Unmarried
4
2.8
Married with children
116
82.9
Married without children
8
5.7
Divorced
0
0
Widowed
12
8.6
Christian
27
20.0
Hindu
98
69.3
Muslim
13
9.3
Other
2
1.4
The socio-demographic preferences and clinical variables were analysed using frequency and percentage. Perceived importances of various dimensions of care were divided into unimportant (0–50%), moderately important (50.1–75%) and extremely important (75.1–100%), as shown in Figure 1 and Figure 2. Item analysis was also carried out for each question. The relationship between perceived importance of care, sociodemographic variables and clinical variables was assessed using Chi-square/Fischer’s test, with a P value of 0.05 being considered significant. Comparison of the patients’ and the health professionals’ perspectives was done using Cohen’s-Kappa.
Variables Age
Gender
Religion
Socio-economic scale (Kuppuswamy Score) Lower–Lower
10
7.1
Upper–Lower
48
34.2
Results and discussion
Lower–Middle
39
27.9
Upper–Middle
39
27.9
Upper
4
2.9
This section discusses the results in the light of investigators’ interaction with the patients during the interview process and literature review. Of 169 eligible patients who were approached, 140 patients could complete the survey. Patient characteristics are shown in Table 1 and Table 2.
administered questionnaires were undertaken by health-care professionals, including physicians and registered nurses.
Description of the instrument The end-of-life care survey for patients (modified from Davison, 2010) contained details of sociodemographic profile, clinical variables and a questionnaire arranged in 2 parts: a) 18 questions about the importance of emotional, social, physical and spiritual dimensions of end-of-life on a rating scale of 0–4; b) 12 multiple-choice questions on end-of-life care preferences. The questionnaire for health professionals had a similar structure and was modified from the same origional source (Davison, 2010) with advice from experts in nursing, psychology and medicine. The Content Validity Index score was calculated as 0.94. The instrument was translated into selected vernacular languages and later retranslated back to English and compared for semantic, technical and content equivalence.
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Emotional and social dimension Most patients (74.3%) disclosed that discussing fear and anxiety is extremely important. Some 84.3% patients considered talking about quality of life with their health team at regular intervals, as very important, as shown in Figure 3. Some subjects (2%) felt that discussing poor prognosis could have a negative effect on their psychological wellbeing. A frequently encountered comment was that clinicians revealed the prognosis to the care giver but not to the patient, as it may psychologically affect the patient unfavourably. Patients who belonged to the older age group, with family commitments wanted to know how long they could live. One respondent said: ‘I want my daughter to get married and get her settled in life. Please tell me whether you can help me to live till then?’
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Marital status
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Some younger patients expressed an element of disbelief and anger at their diagnosis and questioned the credibility of diagnosis. Some patients tried rationalising that they did not have any bad habits. One recurrent question that the investigator faced from almost all the subjects was
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‘Why did this thing happen to me?’
Although 65% of patients favoured family members and friends for emotional and social support, 23.6% of patients preferred physicians and 4.3% favoured nurses (Table 3). Patients also acknowledged that the doctors and nurses may be too busy to address these issues and quoted this as a barrier to discussing these issues with them. Leydon et al (2000) and Escobar Pinzón et al (2010) produced similar results. Around a quarter of patients (23.6%) expressed their lack of understanding of treatment options and felt unable to engage in intellectual conversation with the health team, especially physicians, on this topic. These patients adoped the attitude of ‘the doctor knows what is best for me’. Although the physician’s information was considered credible, most patients wanted a nurse to explain and reiterate the process again in detail and in simpler terms. Patients regarded physicians as a reliable source of information (81.4%) compared to nurses (10.7%) (Table 3). They felt that nursing care was inconsistent because of the lack of coordination between nurses in different shifts and the lack of a primary care nurse. In addition, many nurses did not have time to listen to patient concerns or satisfactorily answer their queries, similar to the findings of Rutten et al (2005). The study showed that 90.7% of patients gave extreme importance to financial arrangement (Figure 3). Many of them felt that they were a financial burden on their family. Loss of employment, personally or of a family member, and consequent loss of income was a major source of concern. Two patients expressed that they had considered ending their lives, because they did not want to be a burden anymore. Some patients were opposed to expensive therapy because of the economic affliction and most of the patients (85.71%) felt the need for financial assistance to bear the treatment expense. Female patients also discussed the fear that their spouse might abandon them. Presence of family members during the illness was rated as highly important by 88.6% of patients, as shown in Figure 3. Some subjects (5%) felt that the presence of only close relatives was important, whereas extended relatives and neighbours could be an added stress. Involvement of family members in care was recognised as a very
International Journal of Palliative Nursing 2014, Vol 20, No 11
Table 2. Distribution of patients based on clinical variables (n=140) Variables
Number
Percentage
Head and neck
33
23.6
Brain
11
7.9
Gastrointestinal tract
17
12.1
Lung and pleura
10
7.1
Breast
32
22.9
Gynaecological
22
15.8
Urological
4
2.9
Lymphoma
3
2.1
Thymoma
3
2.1
Skin
3
2.1
Unknown primary with metastasis
2
1.4
3 years
19
13.6
Stage III
71
50.7
Stage IV
69
49.3
Chemotherapy
38
27.1
Radiation therapy
27
19.3
Combined therapy
75
53.6
Bed-ridden
1
0.7
Ambulatory with support
25
17.9
Ambulatory without support
114
81.4
0
68
48.6
1–3
46
32.9
4–6
19
13.5
7 or more
7
5.0
Type of cancer
Time since diagnosis
Stage of cancer
Type of treatment
Degree of physical dependence
Pain score
important element by 85.7% of patients. Similar results are produced by Fridh et al (2007). The need for an advance directive received mixed responses, with 60% of patients considering it to be extremely important however, 16.43% of the subjects felt that planning could be done by the treating physician and expressed their unfamiliarity with the concept and the medical issues involved. Yet others (9.3%) suggested that planning is of no consequence because of their belief in destiny, fate or God. Another constraint on planning was strikingly expressed by one patient’s remark: ‘What is the use of planning? Ultimately, my husband or son has to decide about my treat-
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n Extremely important n Moderately important n Not important Need for information and communication
83.6
Need for emotional and social support
91.4
Need for symptom management
93.6
Need for artificial prolongation of life
32.1
Spiritual needs
83.6 0
15
1.4 8.5
2.1
5.7 0.7 40
27.9 12.9
10
20
30
40
50
60
70
80
90
3.6 100
Figure 1 : Distribution of patients based on their perception regarding importance of end-of-life care in various dimensions (n=140). n Extremely important n Moderately important n Not important Need for information and communication
42.5
55
Need for emotional and social support
62.5
Need for symptom management
72.5
Need for artificial prolongation of life
7.5
Spiritual needs
60 0
2.5 5
32.5
5
22.5
47.5
45
15
25 10
20
30
40
50
60
70
80
90
100
Figure 2: Distribution of health-care professionals based on their perception regarding importance of end-of-life care in various dimensions (n=40).
Advance directive is a difficult issue in Indian health care owing to poorly developed social security and health insurance; hence most of the decisions are made by the family members. Education and support of family members was an important aspect of end-of-life care for 42.1% of subjects. Patients were worried about what would happen to their loved ones after their death. One male patient said: ‘I will die soon. But my worry is that I am killing my family too in the process. My children are out of school; my wife does not even have her ‘mangalasutra’ [a sacred necklace that a Hindu groom ties around the bride’s neck,
560
which identifies her as a married woman] or good clothes. What am I doing to them? I wish I die soon.’
Modification of lifestyle bothered many patients, which required substantial family support. One patient said: ‘I am on tube feeds. My daughter, son and husband do not eat differently. They drink the same gruel that I take’.
Out of 140 patients, 73% wanted to spend their final hours at home. This finding is supported by studies across the globe (Wilson, 2000; Tang, 2003; Valante, 2004; Sanjo, 2007; Davison, 2010).
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ment. I am not the one who is paying for it.’
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Research Table 3. Relative ranking of various aspects of end-of-life care by patients and health-care professionals Attributes
Options
Number (%) of patients
Number (%) of health-care professionals
Ideal person for emotional and social support
Physician
33 (23.6)
5 (12.5)
Nurse
6 (4.3)
10 (25)
Spiritual advisor
5 (3.6)
2 (5)
Family and friends
91 (65)
20 (50)
Others
5 (3.6)
3 (7.5)
Physician
4 (2.9)
2 (5)
Nurse
7 (5.0)
3( 7.5)
Spiritual advisor
50 (35.7)
21 (52.5)
Family and friends
54 (38.6)
11 (27.5)
Others
25 (17.8)
3 (7.5)
Physician
25 (17.9)
11 (27.5)
Nurse
0 (0)
0 (0)
Spiritual advisor
2 (1.4)
0 (0)
Family and friends
108 (77.1)
27 (67.5)
Others
5 (3.6)
2 (5)
Physician
91 (65)
23 (57.5)
Nurse
9 (6.4)
0 (0)
Spiritual advisor
8 (5.7)
1 (2.5)
Any of the above
18 (12.9)
2 (5)
All of the above
14( 10)
14 (35)
Physician
114 (81.4)
27 (67.5)
Nurse
15 (10.7)
8 (20)
Spiritual advisor
0 (0)
0 (0)
Family and friends
7 (5)
3 (7.5)
Others
4 (2.9)
2 (5)
Before becoming ill
79 (56.4)
13 (32.5)
Seriously ill as defined by health team
10 (7.1)
14 (35)
Seriously ill as defined by self (patient)
9 (6.4)
3 (7.5)
Whenever need arises
30 (21.4)
8 (20)
Not needed
12 (8.6)
2 (5)
Education and support of family
59 (42.1)
9 (22.5)
Pain and symptom management
40 (28.6)
19 (47.5)
Discussing end-of-life preference
3 (2.1)
1 (2.5)
Information about palliative care
19 (13.6)
9 (22.5)
Spiritual care
19 (13.6)
2 (5)
Home
103 (73.6)
33 (82.5)
Hospice
15 (10.7)
3 (7.5)
Hospital
16 (11.4)
1 (2.5)
Religious facilities
6 (4.3)
2 (5)
Others
0 (0)
1 (2.5)
Very comfortable
59 (42.1)
4 (10)
Somewhat comfortable
27 (19.3)
17 (42.5)
Unsure
5 (3.6)
1 (2.5)
Somewhat uncomfortable
46 (32.9)
13 (32.5)
Very uncomfortable
3 (2.1)
5 (12.5)
Very comfortable
102 (72.9)
10 (25)
Somewhat comfortable
21 (15)
24 (60)
Unsure
2 (1.4)
0 (0)
Somewhat uncomfortable
12 (8.6)
5 (12.5)
Very uncomfortable
3 (2.1)
1 (2.5)
Ideal person for spiritual and religious support
Ideal person for taking medical decisions during incapacity (Power of attorney)
Ideal member of health team for discussing end-of-life care preferences
Ideal person for providing information regarding health and well-being
Ideal time for discussing end-of-life preferences
Important aspect of end-of-life care
Ideal place to spend the final hours of life
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Ease of discussing end-of life preference with health team
Ease of discussing end-of life preference with family
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Health professionals
Information about prognosis
Patients
42.5
71.5
Detailed explanation of medical condition
37.5
83.6
Discussing quality of life
37.5
84.3
Discussing fear and anxiety
20
74.3
Discussing various treatment modalities
35
Need for advance directives
69.3
25
60
Involvement of family members in care
50
85.7
Presence of family members
67.5
Financial arrangement
88.6
30
90.7
Symptom management
72.5
Mechanical ventilation
2.5
Cardiopulmonary resuscitation
93.6
22.1 10
36.4
Artificial nutrition
47.5
Discussing spiritual issues
50
Meeting spiritual advisors
68.6 60.7
42.5
Being able to pray
63.6 52.5
Others praying for the patient
89.3
42.5
Considering spiritual preferences while deciding about artificial prolongation
86
35 0
10
20
30
40
59.3 50
60
70
80
90
100
Percentage of subjects
Physical dimension Symptom management was considered to be extremely important by 94% of patients, which is corroborated by many other studies (Valante, 2004; Miyashita et al, 2007; Davison, 2010). Body image disturbance and sexual issues were also mentioned as a recurrent concern during cancer treatment. The investigator received diverse responses from the subjects regarding artificial prolongation of life. Artificial prolongation of life was not considered important to 40% of patients. In gen-
562
eral, patients were aware of the low success rate of mechanical ventilation and cardiopulmonary resuscitation (CPR) and were worried about added pain and unnecessary suffering. They preferred a ‘normal life’ to a ‘vegetative state’. Some 28% of patients considered artificial prolongation of life as moderately important, and thought it was important to try to preserve life but said mechanical ventilation should not be continued for ‘too long’. A significant number of patients (32.1%) ranked artificial prolongation of life as extremely important. Some believed that a mira-
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Figure 3: Percentage of patients (n=140) and health-care professionals (n=40) regarding various attributes of end‑of‑life care as ‘extremely important’ (on item analysis)
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cle would happen in their case. The study results showed significant association between the preference for artificial prolongation of life and age and religion. Younger age groups (83.3%, p=0.03), and non-Hindus (74.5%, p=0.02) gave more importance to artificial prolongation of life than the other subgroups. It was noticed that the younger patients tended to be more optimistic and wanted all lifesaving measures to be tried. These age groups were also comparatively more educated than the older age groups and they sought opinions from different health professionals regarding their prognosis. The investigator could clearly identify the stage of denial and bargaining in congruence to Kübler Ross’s (1969) stages of death. Of the age group 65 years and older, 71.5% were in favour of artificial prolongation of life. They wanted to accomplish more in life and discussed concepts such as finding meaning of life or selffulfilment before they could die. These results are supported by Abraham Maslow’s self-actualisation needs (Maslow, 1943). It is noteworthy that the investigator’s assumption about artificial prolongation of life based on the previously mentioned Kübler-Ross quote was disproved by these results, showing that there was a disagreement among patients on this issue. Many health professionals gave extreme importance to pain and symptom management (72.5%), which is similar to findings from the literature (Singer, 1999; Steinhauser et al, 2000a). Nearly half of the health professionals (47.5%) were not in favour of artificial prolongation of life. Interestingly, only 7.5% of health professionals considered artificial prolongation of life as ‘extremely important’ compared to 32.1% of patients. The subscale receiving the least support from health-care professionals was the option of mechanical ventilation, which 70% regarded as unimportant. The majority (82.5%) supported the need for life-sustaining interventions including artificial nutrition, comfort measures and palliative measures. Some health professionals were undecided about artificial prolongation of life, especially mechanical ventilation (25%) and CPR (15%). Weissman (2004) reported similarly that the physician would attempt artificial prolongation based on risk-benefit, age, clinical status and goal of treatment.
Spiritual dimension Patients placed a great deal of importance on religious rituals. Some 95.7% wanted others to pray for them; the religion of the person praying for them was not a matter of concern to them. Nixon and Narayanasami (2010), brought to
International Journal of Palliative Nursing 2014, Vol 20, No 11
light the spiritual needs of oncology patients which included supportive family relationships, emotional support, meeting religious needs, finding meaning in life and discussion of beliefs. Family or friends were identified as the most desired source of spiritual support by 38% of patients, and 35% wanted their spiritual advisors for spiritual support. Many of the patients (82.85%) wanted their physicians or nurses to have a discussion on spiritual needs, but they felt uncomfortable initiating a conversation owing to a lack of time. One patient said, ‘I acknowledge that the physicians and nurses are too busy; but please understand that cancer is a death summons, your role is to adequately prepare us for the final journey. I need medicines for my soul too. If you are not able to do it, then who will?’
❛ Feasibility in implementing advance directives in India remains a great challenge because of the poorly developed social security system ❜
Religion was not examined in depth in this study. Patients who had faith in a ‘Supreme Being’ expected a miracle to happen in their case. Some 46.4% of Hindus regarded artificial prolongation of life as unimportant owing to religious beliefs and talked about concepts of the birth-rebirth cycle, which would be altered by artificial prolongation of life. Klinkenberg et al (2004), stated that having religious beliefs was negatively associated with expressing preference for artificial prolongation of life. Christians and Muslims identified specific spiritual advisors, whereas Hindus did not do so in most cases. Health-care professionals had varied opinions on spiritual issues. Some 15% of health professionals did not consider spirituality as important, and further explained their stance by confessing that they themselves were not spiritual/religious. Just over half of the health professionals reasoned that the ideal person for patient spiritual support were spiritual advisors. In parallel with this finding, Narayanasamy and Owens (2001) and Jenkins et al (2009) reported that nurses perceived that spiritual care was not part of their realm of care. There was poor correlation between patients and health-care providers in each aspect of endof-life care analysed in this study. These included the emotional, social, physical and spiritual dimensions of care (Kappa coefficient
