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Abstract
Background Only a minority of hospice patients eligible to donate tissue and organs choose to do so. Hospice care staff play a key role in discussions about donation, but their willingness to engage in these discussions and their understanding of issues around tissue and organ donation is poorly understood.
Aims To (i) identify factors associated with the wish of hospice doctors, nurses and healthcare assistants to donate their own organs after death; (ii) survey the experience of discussing the subject with patients; (iii) determine staff members’ knowledge of organ and tissue donation and (iv) identify factors associated with knowledge of organ and tissue donation.
Design Cross-sectional questionnaire survey of hospice care staff.
Setting/participants 76 of the 94 care staff of one large UK hospice completed and returned the questionnaire.
Results Staff wishing to donate their organs after death (43/76 56.6%) were more likely to be doctors or nurses than healthcare assistants (p=0.011) and more likely to have discussed organ or tissue donation with their family (p<0.001). Staff reporting ever having discussed donation with patients had more years’ experience (p=0.045) and had similarly discussed donation with their own family (p=0.039). Those with greater knowledge were more likely to have discussed organ or tissue donation with a patient (p=0.042).
Conclusions A reluctance to instigate discussions about organ and tissue donation may prevent palliative patients and their families being allowed the opportunity to donate. Suboptimal knowledge among hospice staff suggests the need for greater liaison between hospice staff, and the organ and tissue donation teams.
- Hospice care
- Communication
- tissue donation
- organ donation
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Background
Recent guidelines in the UK include the recommendation that organ and tissue donation should be considered as a usual part of care planning for the end of life.1 The latest version of the Liverpool Care Pathway for care of the dying patient2 directs staff to confirm whether or not the dying patient has previously expressed a wish to donate organs or tissues. Current regulations in the UK dictate that no organs or tissues other than corneas can be donated for transplantation by patients with metastatic cancer,3 and it is estimated that half of patients who die in a hospice are eligible to donate corneas.4 All dying patients could potentially donate tissue for research purposes, but this can be difficult to achieve in practice.
Organ donation is not purely an altruistic act; it may also be viewed as a positive outcome by the donors’ family. A study of the perspectives of the families of patients who had donated organs following their death in an intensive care unit, found that organ donation allowed relatives to see meaning in the death of their loved one.5 Family members of hospice patient donors may see the donation as a deep consolation.6 A study of the families of 12 patients with primary brain tumours who died in a hospice and donated their kidneys for transplantation, found the family members to be ‘proud and thankful’ that something positive had come out of their relative's death.7 More recently, it has been argued that there is a moral imperative to discuss tissue and organ donation with palliative care patients.8 Despite this, the possibility of donation is rarely mentioned in the hospice setting.9
Attitudes and lack of knowledge among patients, relatives and healthcare professionals have been identified as potential barriers to organ and tissue donation. Patients and relatives may feel that organs from older patients or patients with cancer are unsuitable for transplantation.6 For the next of kin, religious beliefs, shock, grief and a lack of knowledge about a loved one's wishes are other factors limiting the opportunity for donation.10 Many potential donors will not be identified by healthcare staff11 either due to a lack of knowledge or a reluctance to approach potential donors. A study of intensive care staff found that up to 61% of the professionals involved in the donation process in the intensive care setting felt uncomfortable approaching donor families.12 Among American primary care doctors, a lack of training was identified as a reason for having difficulty in discussing organ donation.13
There is relatively little in the literature concerning the views of healthcare professionals working in palliative care settings. This is surprising, as they are regularly involved in end of life discussions. One small qualitative study14 found that staff recognised the importance of patient choice regarding tissue and organ donation, but felt uncomfortable discussing the subject and were afraid of adding to the patients’ distress. A recent study investigated the obstacles to corneal donation in the hospice setting and found that the key reasons for staff not engaging in these discussions included negative experiences of corneal donation, concerns about the effect of such conversations on patients, low levels of training, issues around the personal significance of eyes and a perception that donation is not part of hospice culture.15
The aims of this study were to explore the associations between a wish to donate, experience of discussing organ or tissue donation with patients, and knowledge of organ and tissue donation among hospice care staff. Specifically we wanted to: (i) identify factors associated with the wish of hospice doctors, nurses and healthcare assistants to donate their own organs after death; (ii) survey the experience of discussing the subject with patients; (iii) determine staff members’ knowledge of organ and tissue donation and (iv) identify factors associated with knowledge of organ and tissue donation.
Methods
The study took place at a large hospice in the UK. The hospice serves a population of about 1 000 000 with a range of services including 31 inpatient beds. It employs 12 doctors, 54 nurses and 28 healthcare assistants. Each year, the hospice cares for 1700 patients with end-stage malignant or non-malignant disease and their carers. Approximately 300 patients die in the hospice each year. We conducted a self-completion questionnaire survey of knowledge of and attitudes towards organ and tissue donation among hospice care doctors, qualified nurses and healthcare assistants (defined as a support worker working under the direct supervision of a registered nurse).
The questionnaire was based on that developed by Vrtis et al10 to assess the knowledge of organ donation of critical care nurses working in America. This tool was chosen because of its reliability and validity, but was modified to make it relevant for staff working in a hospice environment in the UK. Specifically, questions about brain stem death were removed, as knowledge of this is not relevant in a hospice setting. The modified questionnaire included questions about: (1) their hospice work, including their role and years worked; (2) personal views, including whether or not they held religious beliefs and whether they wished to donate their organs or tissue after death; (3) work practices and experiences, including whether the respondent had ever discussed organ or tissue donation with a patient; and (4) knowledge of organ and tissue donation, including what organs and tissues a patient dying of (i) cancer and (ii) non-malignant disease would be able to donate.
To compare those members of staff with a basic knowledge of organ and tissue donation to those without, we defined ‘basic knowledge’ as being aware that a person dying of cancer was able to donate his or her corneas but not heart valves, lungs, ovaries, gall bladder, spleen, pancreas, kidneys, liver or bones for transplantation. The modified questionnaire was piloted among palliative care nurses working at the local hospital. These questionnaires were not included in the analysis.
All 94 members of the medical, nursing and care staff working at the hospice were sent a questionnaire and participant information leaflet via the internal post system at the hospice. Staff returned their questionnaires via the internal post in the addressed envelope provided. Awareness of the study was promoted at team meetings.
The study protocol gained ethical approval from the Leicestershire, Northamptonshire & Rutland Research Ethics Committee (REC reference 11/EM/0052).
Statistical analysis
χ2 Tests were used for binary and nominal variables, and Mann–Whitney U tests were used for ordinal variables to test for differences between (i) those staff members who wished to donate organs or tissue after their death and those who did not, (ii) staff who had discussed organ donation and those who had not, and (iii) staff with ‘basic knowledge’ of organ donation and those without. Data were analysed in Stata V.12.0 (StataCorp, College Station, TX, USA).
Results
Of the 94 questionnaires distributed, 76 were returned, a response rate of 80.9%. Respondents were predominantly nurses (n=48, 63.2%) with 18 healthcare assistants (23.7%) and 10 doctors (13.2%) (table 1). The majority of respondents had been working in their capacity as doctor, nurse or healthcare assistant for more than 10 years (47/76, 61.8%). Just over half of the sample reported having ever discussed organ or tissue donation with a patient (39/76, 51.3%).
Hospice role, experience, practice and beliefs about organ and tissue donation among a sample of hospice staff (n=76)
Although more (49/76, 65.3%) reported that they would discuss organ and tissue donation if the subject was raised by a patient or their family, only one respondent reported routinely discussing the issue. Only a minority of staff considered that when the patient was either dying (6/75, 8.0%) or during a time of illness (5/75, 6.7%) was the most appropriate time to discuss organ and tissue donation. Most staff believed a conversation about tissue and organ donation would cause patients (75.7%) and relatives (64.5%) to feel uncomfortable.
Just over half of respondents expressed a wish to donate their organs after death (43/76, 56.6%). Doctors were more likely than nurses (80.0% vs 62.5%), and nurses were more likely than healthcare assistants (62.5% vs 27.8%) to report a desire to donate their organs or tissues after death (p=0.011) (table 2). Among respondents who had discussed donation with their own family, a greater proportion reported wanting to donate after death, compared to those respondents who had not discussed donation with their family (73.9% vs 30.0%, p<0.001). A wish to donate was not associated with length of healthcare experience (p=0.361), holding religious beliefs (p=0.082), having known someone in need of organ transplant (p=0.578) or having ever discussed donation with a patient (p=0.370).
Comparison of hospice staff who do and do not wish to donate their organs/tissues after their death and of hospice staff who have or have not discussed organ/tissue donation with a patient (n=76)
Those with more years of healthcare experience were more likely to report having held discussions about organ or tissue donation with patients (p=0.045). Reporting discussing donation with a patient was also associated with a member of staff having discussed their own preferences regarding donation with their family (p=0.039). There was no association between having held discussions with patients and hospice role (p=0.212), holding religious beliefs (p=0.324) or having known someone in need of an organ transplant (p=0.063).
Most (94.7%) staff correctly identified that patients with metastatic malignant disease could donate their corneas for transplantation but there was less certainty about what organs patients dying of cancer were unable to donate (table 3). Some members of staff also thought that these patients could donate heart valves (13/76) and bones (10/76). Members of hospice staff were less sure about what patients dying of non-malignant disease in the hospice setting could donate, though most (86.7%) knew that these patients could donate their corneas.
Knowledge relating to organ/tissue donation among hospice staff (n=75)*
Of the 75 respondents who answered the questions relating to which organs and tissues may be donated by patients dying with and without cancer, we categorised 32 (42.7%) as having ‘basic knowledge’ on the basis that they correctly identified which organs and tissues a patient with cancer could or could not donate (table 4). Those having ‘basic knowledge’ were more likely to have discussed organ or tissue donation with a patient (p=0.042). Knowledge was not associated with staff group (p=0.763), years of experience (p=0.116), having discussed donation with their own family (p=0.858), having known someone in need of organ transplant (p=0.333) or wishing to donate own organs/tissues after death (p=0.525).
Comparison of hospice staff with and without good knowledge* of organs/tissue donation after death (n=75)
Discussion
This study adds to what is currently known about hospice care staff members’ views of organ and tissue donation by exploring associations between a desire to donate one's own tissues or organs, knowledge of donation and experience of discussing donation with patients. In our study, half of our sample of hospice doctors, nurses and healthcare assistants reported having discussed organ or tissue donation with a patient. Most staff felt that any discussion on the subject is best placed when the patient was well. Most also felt that discussions were likely to make patients and relatives feel uncomfortable, echoing the findings of a previous study.15 Staff members who had discussed donation with patients had more years of hospice experience and were more likely to have discussed donation of their own organs with their family. The proportion of those wishing to donate organs or tissue after death was greatest among doctors and lowest among healthcare assistants, and a wish to donate was associated with having discussed donation with their own family.
There was much uncertainty regarding which tissues and organs patients dying of cancer or non-malignant disease might be able to donate after death. Greater knowledge about this was positively associated with having had a discussion about donation with a patient.
Just over half of hospice staff expressed a wish to donate their own organs or tissues after death, the majority of whom had discussed the matter with their own family. This suggests that those who ultimately decide to donate do so after discussing the matter with those they feel close to. That hospice staff rarely instigate these discussions, perhaps assuming this conversation will be initiated by patients or their relatives, is likely to limit the opportunity for palliative care patients to donate their organs after death. Other work suggests that most relatives believe that patients dying in a hospice are precluded from donating their organs and tissues, and therefore do not raise the subject.6 There are calls for palliative care staff to be more proactive in informing patients of their options regarding tissue and organ donation.8 In a qualitative study of hospice staff, it was felt that raising the subject of tissue donation with patients was a professional responsibility.14 We found no association between a member of staff's personal wish to donate and whether or not the subject was discussed with patients. This is in contrast to a study that found that nurses who were clearly opposed to donation allowed this objection to influence their practice.1,6 This is perhaps due to a difference in the clinical specialty of the two samples: in Sque et al's study nurses were from general ward and accident and emergency departments, where a lack of time and less experience with dying patients may work against holding sensitive discussions about donation with patients and families.
The majority of our sample felt that discussing tissue and organ donation would be distressing to patients and relatives. Other research has found that when hospice patients and their relatives are approached in a sensitive and appropriate manner, there is a clear benefit to the bereaved family.7 Findings from a small qualitative study restricted to families who had consented to donation of their relatives’ corneas suggested that a sensitive inquiry into donation is acceptable to the majority of families in a palliative care setting.6
In a study of critical care staff, training of nurses and doctors was associated with higher rates of organ donation.1,7 This helps explain why, in our study population, those having basic knowledge were more likely to discuss the issue with patients than those members of staff without basic knowledge. The majority of staff knew that corneal donation could be an option for their patients, but we still found significant gaps in knowledge, especially regarding patients dying of non-malignant disease. This may change as the hospice population changes but highlights the need for targeted training.
Our data were collected using a self-report questionnaire and we cannot rule out the possibility of social desirability bias,19 whereby respondents considered discussing organ donation with dying patients as ‘good practice’ but their answers were not reflective of their actual practice. The potential for this was reduced by a self-report rather than an interviewer-administered questionnaire. The cross-sectional design of the study means we cannot infer a causal relationship that staff knowledge leads to a greater willingness to discuss organ donation with a patient. It is not inconceivable that a discussion initiated by a patient led to a greater understanding by the staff member.
The study sample was confined to one large UK hospice and it is possible that its staff will have been exposed to a broader range of experience and a greater likelihood of contact with a patient wishing to donate than staff from smaller hospices. Our sample size is small and without sufficient power to undertake subgroup analysis for the three staff groups. However, the response rate of 81% was relatively high for a self-completion survey, thereby minimising non-response bias.
The questionnaire used in our study did not differentiate between organ donation and tissue donation, and may have lacked sensitivity in identifying those who hold different views. Other work suggests that 10% of staff willing to donate their organs are not willing to donate their corneas.15 Similarly, we cannot be certain that reported discussions with patients always took place in palliative care settings, as staff may have referred to previous work in different care contexts.
Palliative care staff may be ideally placed to make donation ‘usual rather than unusual’,8 and lessons can be learnt from how this has been achieved in the acute setting.19 Version12 of the Liverpool Care Pathway2 includes a check on whether wishes regarding tissue and organ donation have been discussed, but most people surveyed felt these conversations need to have taken place before patients enter their final few days of life. Palliative care and hospice staff need to know the contraindications for donation, the time window and the process for viable donation. The outcomes of successful donations should be fed back to all those involved, and missed opportunities should be audited and analysed. Links need to be developed between hospice staff and the organ and tissue donation teams for education to be ongoing and current.
Acknowledgments
This study was supported by the Association for Palliative Medicine of Great Britain and Ireland Napp Research Bursary 2010 and LOROS, Hospice Care for Leicestershire and Rutland.
References
Footnotes
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Contributors JW was responsible for study design, conducting the research and data collection, supported by CF. AA provided guidance with the statistical analysis of the results and co-wrote the paper. JW is responsible for the overall content as guarantor.
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Funding The NAPP Research Bursary awarded by the Association of Palliative Medicine of Great Britain and Ireland in 2010 provided funding for the study.
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Competing interests None.
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Provenance and peer review Not commissioned; externally peer reviewed.