Communication With Family After Loss, in the Context of Transplantology ska-Szalbierza, N. Matoszkab,*, A. Sepiołoc, and M. Ostrowskia E. Skwirczyn a Department of General Surgery and Transplantation, Pomeranian Medical University, Szczecin, Poland; bDepartment of Medical Analytics, Pomeranian Medical University, Szczecin, Poland; and cDepartment of Surgical Nursing, Pomeranian Medical University, Szczecin, Poland
ABSTRACT Background. Cooperation with a patient is a joint venture, based on a division of power and authority. Its character is not hierarchical. It assumes that this power is based on knowledge and experience, which is the opposite of power based on role or position. The good doctorpatient relationship affects a range of factors, including the healing process, the possibility of understanding the causes of a disease and its treatment and in a broader perspective, trust in the health service, which can in turn have a positive influence on public attitudes to organ donation. Because consent is presumed in Poland, there is no family consent requirement for organ donation of a deceased family member. In practice, however, medical professionals usually strive to get consent from family members, and in cases of refusal, they will not harvest. The aim of our study was to answer the following questions: (1) Does the way in which care was provided for the still-alive patient, as well as the relationship between the doctor and the patient’s family, influence the family’s decision to agree to the harvest of the dead patient’s organs? (2) Does previous experience with healthcare institutions and personnel influence their decision to agree to organ donation? Methods. Research was conducted on a group of 173 people, using a questionnaire comprising 18 questions. Results. Obtained results show that 34% of people are satisfied with the level of medical care. The majority claim that doctors treat them without due care. Thirty-eight percent believe that doctors are capable of stopping therapy in order to get organs for transplantation. Conclusions. It is necessary to recognize the correlation between a correct doctor-patient relationship, gaining trust, and how reliable a doctor’s opinions are. A patient’s conviction that he or she is well treated may lead to regaining the belief in the straightforwardness of the doctor’s opinion, and less dissatisfaction with and less criticism of medical care.
R
ECENT years have seen a large and rapid development in medicine and related sciences that can be observed both in diagnosis and therapy. Although the new achievements in genetics and molecular biology are welcome and noteworthy, much attention still should be devoted to the most important component and object of medical processes, namely, the patients and their attitudes toward medical and healthcare services and professionals. Apart from instrumental medical methods and aims, psychological factors affecting the relationship between patient and medical staff are very important but often underestimated elements of the healing process [1]. In 2007, 73% of the Polish population
supported the procurement and transplantation of organs from the dead. At the same time, 38% believed that doctors may cease the therapy or even put patients into “eternal sleep” to obtain organs for transplantation [2]. Similar data were obtained in December 2012 in a study of 115 respondents, in which 82% of respondents supported transplantation, and 32% answered “yes” when asked “Are doctors capable of killing the patient in order to attain an *Address correspondence to Natalia Matoszka, Department of Medical Analytics, Pomeranian Medical University, Szczecin, Poland. E-mail: [email protected]
0041-1345/14/$esee front matter http://dx.doi.org/10.1016/j.transproceed.2014.06.016
ª 2014 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
2036
Transplantation Proceedings, 46, 2036e2039 (2014)
TALKING WITH FAMILY AFTER TRANSPLANT LOSS
organ?” Another 42% had “no opinion,” and only 26% felt that doctors were “not capable” of doing so. Today, hundreds of Polish people are living with a transplanted heart and thousands with transplanted kidneys, livers, lungs, and corneas. If all Polish organ transplant recipients gathered in one place, they would form a considerable town. The correlation between the results of treatment and medical staff’s approach to the patient, as well as the patient’s attitude towards staff, was first noticed by Talcott Parsons, an American sociologist and the author of the still valid concept of health and disease [3]. In Poland, harvesting, preservation and transplantation of cells, tissues and organs are regulated by the Parliament Act of July 1, 2005. The Act specifies the definition of organ recipient, donor, and their mutual relations. This allows the procurement of organs from a deceased person if he or she did not refuse to donate organs with the Central Register of Objections. The Act also regulates the procurement of living donor organs, such as kidneys (paired organ), a part of a regenerative organ (liver), or regenerative cells (bone marrow). It prohibits commercialization of organ sale under threat of imprisonment. Nevertheless, the public perception of the Act is ambivalent. The most controversial issue is the notion of brain death. Legally, the person is considered dead when the Medical Board diagnoses brain death as a consequence of craniocerebral trauma, stroke, or any other reason leading to irreversible coma. However, a deceased’s family may not believe that the process is irreversible when looking at the ECG monitor showing heart action. A short while later comes the questiondtraumatic for both the family and physiciansd about the will of the deceased person for organ donation. Formally, the agreement of deceased’s closest family is not necessary; however, the law and social custom should be considered separately. According to the law, the family does not have the right to decide about the deceased’s organs, but in practice, if the family does not agree to the organ procurement, the transplantation(s) will not be performed due to the moral conviction of medical staff that the family’s opinion on donation is paramount, or to avoid conflict, public confusion and criticism in such situations. Also, the term “consent” can have two different meanings in such situations. The first is direct agreement, supported by the Catholic Church and practiced in several countries, including the Netherlands, England, Denmark, and the U.S., in which citizens express their consent in a form of declaration on a special donor card. The second meaning involves “presumed consent,” which means the patient did not object to the donation of his organs after death via a written entry in the Central Register of Objections (CRO), or in any other form. However, as practice has shown, if the will of the deceased’s regarding organ donation has not been formally written, it is usually impossible to determine, and his relatives very often refuse to give the consent for harvesting. Even if the family cannot legally forbid donation, the medical staff often will not perform any harvesting. There are several reasons underlying such skeptical, negative approach. First is the lack of knowledge or
2037
incomplete knowledge regarding donation. Although the issue of presumed consent has been raised by the media, it is not sufficiently popularized. Given the Polish law and the small number of “family transplantations,” more attention should be focused on attaining organs from donors with a brain-death diagnosis. Obtaining approval from family for transplantation of organs is the most difficult task for intensive care unit (ICU) staff. Apart from traumatic circumstances, it seems that a large part of the refusal to allow organ harvesting is due to resentment of and lack of trust in the healthcare services. This probably arises from negative experiences during previous contact with health services, especially visits to primary care physicians or during hospital stays, which may have included negligent treatment and an unreliable, objectifying manner. In the opinion of patients and those closest to them, healthcare professionals involved in their treatment provide a lot of information but are rarely interested in the patient. Specialists may be well qualified to perform surgery and organ transplantation, but are perceived to be isolated from other people’s feelings and doubts. The communication between medical professionals, patients and their families has a direct impact on patient satisfaction with the doctorepatient relationship. Moreover, due to a patient’s dissatisfaction, even well-qualified physicians, may be viewed as untrustworthy and accused of incompetence. These situations and opinions are reflected in the attitude of the deceased’s family to organ donation. The contrast between what the patient and his family expect and what they experience from medical personnel is significant. In her analysis of interview techniques used to communicate with the family of a potential donor, psychologist Anna Jakubowska-Winecka emphasized that the purpose of such an interview should not be to push the family for consent to the organ harvest itself, but merely to determine what the deceased thought about it, as it may diametrically change the family’s opinion about organ donation. An empathetic dialogue needs to take place between the physician and the representatives of the family, as the family’s opinion is always very important, irrespective of the official law [2,4]. As our study shows, knowing the deceased’s will regarding the fate of his organs can positively influence the attitude of the family to organ donation and harvesting. AIM OF THE STUDY
The aim of this study is to answer two questions: Why does a large proportion of families of the deceased not give consent for organ donation? Is the decision of the family affected by the conduct of medical care of the still-alive patient in the ICU and by the previous experiences of medical care, as well as by the relationships between physicians and the people closest to the patient. METHODS Research was conducted on a group of 173 people, who were given an 18-question questionnaire. A representative sample was
2038 obtained of the Polish population aged 18e58 in northwestern Poland, in public places such as a post office, car showroom, or sports hall.
Statistical Analysis Results are shown as descriptive analysis and presented as a percentage of the whole group.
RESULTS
The questionnaire completion rate was 100% (N ¼ 173). Most people had secondary and higher education and permanent employment and were in good health. Using a 10-point scale, the majority of them rated the doctors at
ABSTRACT Background. Cooperation with a patient is a joint venture, based on a division of power and authority. Its character is not hierarchical. It assumes that this power is based on knowledge and experience, which is the opposite of power based on role or position. The good doctorpatient relationship affects a range of factors, including the healing process, the possibility of understanding the causes of a disease and its treatment and in a broader perspective, trust in the health service, which can in turn have a positive influence on public attitudes to organ donation. Because consent is presumed in Poland, there is no family consent requirement for organ donation of a deceased family member. In practice, however, medical professionals usually strive to get consent from family members, and in cases of refusal, they will not harvest. The aim of our study was to answer the following questions: (1) Does the way in which care was provided for the still-alive patient, as well as the relationship between the doctor and the patient’s family, influence the family’s decision to agree to the harvest of the dead patient’s organs? (2) Does previous experience with healthcare institutions and personnel influence their decision to agree to organ donation? Methods. Research was conducted on a group of 173 people, using a questionnaire comprising 18 questions. Results. Obtained results show that 34% of people are satisfied with the level of medical care. The majority claim that doctors treat them without due care. Thirty-eight percent believe that doctors are capable of stopping therapy in order to get organs for transplantation. Conclusions. It is necessary to recognize the correlation between a correct doctor-patient relationship, gaining trust, and how reliable a doctor’s opinions are. A patient’s conviction that he or she is well treated may lead to regaining the belief in the straightforwardness of the doctor’s opinion, and less dissatisfaction with and less criticism of medical care.
R
ECENT years have seen a large and rapid development in medicine and related sciences that can be observed both in diagnosis and therapy. Although the new achievements in genetics and molecular biology are welcome and noteworthy, much attention still should be devoted to the most important component and object of medical processes, namely, the patients and their attitudes toward medical and healthcare services and professionals. Apart from instrumental medical methods and aims, psychological factors affecting the relationship between patient and medical staff are very important but often underestimated elements of the healing process [1]. In 2007, 73% of the Polish population
supported the procurement and transplantation of organs from the dead. At the same time, 38% believed that doctors may cease the therapy or even put patients into “eternal sleep” to obtain organs for transplantation [2]. Similar data were obtained in December 2012 in a study of 115 respondents, in which 82% of respondents supported transplantation, and 32% answered “yes” when asked “Are doctors capable of killing the patient in order to attain an *Address correspondence to Natalia Matoszka, Department of Medical Analytics, Pomeranian Medical University, Szczecin, Poland. E-mail: [email protected]
0041-1345/14/$esee front matter http://dx.doi.org/10.1016/j.transproceed.2014.06.016
ª 2014 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
2036
Transplantation Proceedings, 46, 2036e2039 (2014)
TALKING WITH FAMILY AFTER TRANSPLANT LOSS
organ?” Another 42% had “no opinion,” and only 26% felt that doctors were “not capable” of doing so. Today, hundreds of Polish people are living with a transplanted heart and thousands with transplanted kidneys, livers, lungs, and corneas. If all Polish organ transplant recipients gathered in one place, they would form a considerable town. The correlation between the results of treatment and medical staff’s approach to the patient, as well as the patient’s attitude towards staff, was first noticed by Talcott Parsons, an American sociologist and the author of the still valid concept of health and disease [3]. In Poland, harvesting, preservation and transplantation of cells, tissues and organs are regulated by the Parliament Act of July 1, 2005. The Act specifies the definition of organ recipient, donor, and their mutual relations. This allows the procurement of organs from a deceased person if he or she did not refuse to donate organs with the Central Register of Objections. The Act also regulates the procurement of living donor organs, such as kidneys (paired organ), a part of a regenerative organ (liver), or regenerative cells (bone marrow). It prohibits commercialization of organ sale under threat of imprisonment. Nevertheless, the public perception of the Act is ambivalent. The most controversial issue is the notion of brain death. Legally, the person is considered dead when the Medical Board diagnoses brain death as a consequence of craniocerebral trauma, stroke, or any other reason leading to irreversible coma. However, a deceased’s family may not believe that the process is irreversible when looking at the ECG monitor showing heart action. A short while later comes the questiondtraumatic for both the family and physiciansd about the will of the deceased person for organ donation. Formally, the agreement of deceased’s closest family is not necessary; however, the law and social custom should be considered separately. According to the law, the family does not have the right to decide about the deceased’s organs, but in practice, if the family does not agree to the organ procurement, the transplantation(s) will not be performed due to the moral conviction of medical staff that the family’s opinion on donation is paramount, or to avoid conflict, public confusion and criticism in such situations. Also, the term “consent” can have two different meanings in such situations. The first is direct agreement, supported by the Catholic Church and practiced in several countries, including the Netherlands, England, Denmark, and the U.S., in which citizens express their consent in a form of declaration on a special donor card. The second meaning involves “presumed consent,” which means the patient did not object to the donation of his organs after death via a written entry in the Central Register of Objections (CRO), or in any other form. However, as practice has shown, if the will of the deceased’s regarding organ donation has not been formally written, it is usually impossible to determine, and his relatives very often refuse to give the consent for harvesting. Even if the family cannot legally forbid donation, the medical staff often will not perform any harvesting. There are several reasons underlying such skeptical, negative approach. First is the lack of knowledge or
2037
incomplete knowledge regarding donation. Although the issue of presumed consent has been raised by the media, it is not sufficiently popularized. Given the Polish law and the small number of “family transplantations,” more attention should be focused on attaining organs from donors with a brain-death diagnosis. Obtaining approval from family for transplantation of organs is the most difficult task for intensive care unit (ICU) staff. Apart from traumatic circumstances, it seems that a large part of the refusal to allow organ harvesting is due to resentment of and lack of trust in the healthcare services. This probably arises from negative experiences during previous contact with health services, especially visits to primary care physicians or during hospital stays, which may have included negligent treatment and an unreliable, objectifying manner. In the opinion of patients and those closest to them, healthcare professionals involved in their treatment provide a lot of information but are rarely interested in the patient. Specialists may be well qualified to perform surgery and organ transplantation, but are perceived to be isolated from other people’s feelings and doubts. The communication between medical professionals, patients and their families has a direct impact on patient satisfaction with the doctorepatient relationship. Moreover, due to a patient’s dissatisfaction, even well-qualified physicians, may be viewed as untrustworthy and accused of incompetence. These situations and opinions are reflected in the attitude of the deceased’s family to organ donation. The contrast between what the patient and his family expect and what they experience from medical personnel is significant. In her analysis of interview techniques used to communicate with the family of a potential donor, psychologist Anna Jakubowska-Winecka emphasized that the purpose of such an interview should not be to push the family for consent to the organ harvest itself, but merely to determine what the deceased thought about it, as it may diametrically change the family’s opinion about organ donation. An empathetic dialogue needs to take place between the physician and the representatives of the family, as the family’s opinion is always very important, irrespective of the official law [2,4]. As our study shows, knowing the deceased’s will regarding the fate of his organs can positively influence the attitude of the family to organ donation and harvesting. AIM OF THE STUDY
The aim of this study is to answer two questions: Why does a large proportion of families of the deceased not give consent for organ donation? Is the decision of the family affected by the conduct of medical care of the still-alive patient in the ICU and by the previous experiences of medical care, as well as by the relationships between physicians and the people closest to the patient. METHODS Research was conducted on a group of 173 people, who were given an 18-question questionnaire. A representative sample was
2038 obtained of the Polish population aged 18e58 in northwestern Poland, in public places such as a post office, car showroom, or sports hall.
Statistical Analysis Results are shown as descriptive analysis and presented as a percentage of the whole group.
RESULTS
The questionnaire completion rate was 100% (N ¼ 173). Most people had secondary and higher education and permanent employment and were in good health. Using a 10-point scale, the majority of them rated the doctors at
