Caregivers' active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study
© Weibull et al; licensee BioMed Central Ltd. 2008
Received: 03 April 2008
Accepted: 16 September 2008
Published: 16 September 2008
Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.
The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.
Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).
The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.
Family members have always been active in palliative home care, but in modern times death is no longer merely a family event. The role of the professional extends into the home of the dying, where primary health care and palliative care teams can provide highly specialized treatment for the dying. The spouse's involvement in this treatment is often a prerequisite for home death.
Home deaths have been shown to be associated with both better bereavement response and better physical health post-bereavement than inpatient deaths  and it has been shown to be important to the family member to have been doing something for the loved one who died [2–4].
However, literature has shown that whenever family caregivers take an active part in the patients' treatment it might have a negative effect on the relatives' mental and physical wellbeing [2, 13] and that the relatives sometimes experience an unspoken pressure from the professionals to be 'professionals' rather than loving relatives .
Examples of family caregivers' active involvement in palliative care
Being in charge of the patients medication
Administering oral or subcutaneous medication
Administering subcutaneous needles
Personal hygiene of the patient
Treatment of wounds
Dealing with ostomy, stomach tube etc.
It follows from this that it is unclear whether the health care professionals should actually encourage and recommend the spouses to take an active, hands-on role, in palliative care. Furthermore we need to know which conditions concerning the active involvement of the spouses should be fulfilled to secure a positive outcome for the spouses and the patients.
Hence, there is a profound need for greater understanding of how and if the professionals should approach the family caregivers concerning active involvement in medical and physical care.
The aim of this study was to explore the impact that bereaved spouses' active involvement in medical and physical care has on their experience of the palliative course of disease.
This study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses from an area (with approximately 30,000 inhabitants) of Djursland, Denmark from December 2006 to March 2007.
The Danish health care system is financed through taxes and provides free and equal access to health care services. More than 98% of the Danes are registered with a general practitioner (GP) and receive free medical care . Danish GPs provide most of the health care themselves and act as gatekeepers for access to specialist treatment.
Palliative home care in Denmark is performed by the local GP to whom the patient is registered, the primary health care nurses and the palliative care teams organized at the hospitals. In the study area, the distance to the local hospital is up to 60 km and there is hardly any access to home visits by the palliative care team. Specialist advice can be achieved by the GP or the nurses by telephone contact with the palliative team or by admitting the patient to the hospital. Primary health care nurses visit patients at home on a 24-hour basis. GPs mostly visit patients at home during working hours and some allow their patients to contact them during out-of-clinic hours by providing the caregiver with their private telephone number. Relatives who act as caregivers for terminally ill patients can be granted paid leave from regular jobs by the social security system.
Family caregiver (Respondent)
Relation to patient
Primary tumour unknown
Pancoast tumour (lung cancer)
The study was presented to the regional ethics committee of Aarhus County in December 2005. Their answer was that according to Danish committee law (§ 8, stk. 3) all research projects in Denmark involving human beings or any kind of human tissue, cells etc. need permission from a regional ethics committee, but since this study was an interview study and did not involve biological material it did not need permission (Journal-nr: 2005-2.0/85).
Inclusion criteria for bereaved relatives
The relative must be spouse to an adult deceased cancer patient
The palliative course of disease must mainly have taken place at home
The cancer patient must have died between one and three years before the inclusion
The patient and spouse must be 18 years or more
The spouse must speak and understand Danish
The spouse must be mentally and physically able to participate in an interview
All interviews were performed by AW in the homes of the relatives. All authors are GPs; AW is also a qualified specialist in palliative care (Nordic Course in Palliative Medicine 2005–2007). FO and MAN are experienced in qualitative research methods.
Description of the course of disease
How were you involved?
What was your influence on decisions?
Who asked you to participate?
Who helped you?
Feelings connected to active involvement in care giving
What were your positive/negative feelings?
What were your personal limits?
Death and bereavement
What was the implication on bereavement?
Would you do it again?
What were good/bad experiences?
What is your advice to others?
Data coding was performed using the software package NVivo, ed. 6 and triangulation within the group of researchers was used to ensure the quality of coding.
Four main categories were identified: Degree of involvement, Positive and Negative impact and Prerequisites.
Degree of involvement
"But you see, it is because you have done your very best over a long period of time, isn't it. And it ... well, it is an odd thing to say, but we were bloody tired in the end, I can tell you so ... and I can't...I can't see...she died at home without any problems, and we laid her in the coffin, and we carried her out of the house, didn't we, and we lowered her into the grave – well I can't see... no matter how you look at it or no matter what you do, you can't... it couldn't be... that's the way it was! And after all it feels good to have done it." (Respondent 7)
The above quote demonstrates that all the respondents went through a period of life where they reached their limits psychologically and physically, and still ended up having had a positive experience due to the fact that they contributed and were able to do so.
"Then our own GP had said: 'If there are any problems, you just call me', and then he gave us his private number – and then I called him and ... – well, he came very, very quickly." (Respondent 5)
"The home care services I could reach by phone and the nurse I could reach by phone, and our own GP I could reach by phone, I could call her at all hours." (Respondent 7)
"The very first time she had to use a bedpan in bed, we talked about ... of course we could do it ourselves, but I only did it once then I called ...and they came very quickly."(Respondent 7)
"Yes, I would, definitely I would, no doubt about that." (Respondent 4)
"I crossed my own boundaries. I have always thought that dentures are very disgusting, but I could ... wearing gloves I could easily clean them. It was only the first time ... after that it was no problem." (Respondent 1)
"... but I readily admit ... if somebody had said to me the year before: "Now you will have to go through this and that", then I would probably have ... perhaps have said: "No, I can't do that", but you can, but there is a reaction afterwards." (Respondent 2)
"I am glad ... well, I am actually glad about ...not about the course, because that was terrible, but I am glad that it developed the way it did in the sense that I was able to help her." (Respondent 4)
"Actually I was glad I could do it....then we had the day to ourselves, without all these comings and goings." (Respondent 7)
"Well, I will put it like that: If I had not wanted to do it, and she had had to go somewhere else to die, then I think I would have been ashamed of myself for the rest of my life that I could not ... be the one who could be closest ... well, that, I think, I could not bear to live with." (Respondent 4)
"I think it makes it easier to get through the grief process, because – well – you have done all you could." (Respondent 3)
"Afterwards, I cannot blame myself for taking the easy way out and not being involved – so I am actually feeling quite pleased with myself." (Respondent 7)
"I also have to say, that if you don't just throw yourself into it – you really miss out on something..." (Respondent 6)
"It was really good, indeed, and you can do exactly as you want, and I hope ... yes I really hope that there are others who will take pleasure in it ... I hope that there are others who will do it." (Respondent 6)
"On the other hand – it must have been so hard after all that I think – my children are never going to care for me – I want to go to hospice or nursing home. So, even though I am glad I did it, and satisfied with myself, it was too hard or else I wouldn't think like so, would I?" (Respondent 1)
"... but the first time ... you didn't see the same doctor twice, you know ... then it was a young lady who came who was very good and whom my wife liked, but then the weekend came and then she is gone." (Respondent 5)
"... ... I think it was very frustrating because when you needed to know something out there (at the hospital) ...well, you really had to insist, and once out there I was called absolutely hysterical, and then I looked at the doctor who came in and then I said: 'let me tell you one thing, you walk out that door now and then you find the consultant NOW – and don't call me hysterical!' And then she kind of had to explain to me what she wanted." (Respondent 6)
Three categories emerging from the analysis addressed prerequisites: Safety, Confidence and Dialog.
"It worked very well, and I really trusted those nurses I must say ...I really did... That's where I got my support from." (Respondent 3)
"Actually it was because the backup was good, that is ...well ... I didn't feel insecure at all." (Respondent 7)
"His doctor never doubted my ability to undertake the task." (Respondent 1)
"I think they (the professionals) should let the relative offer to help – ask them 'how do you feel about assisting with personal hygiene?' etc." (Respondent 1)
"I think they should ask, I think there are some people who won't ... will never get around to it, I think because I do think ...well, I think ... it would be so easy just to lean back and watch it all ... then you are not part of anything, you see." (Respondent 4)
This study indicates that spouses' active involvement in palliative care has a positive effect on bereavement given that certain preconditions are fulfilled. The answers from the respondents were quite unanimous. It gives comfort in bereavement to have been active and able to help.
The most important preconditions for a positive effect are safety, e.g. professional back-up 24 hours a day, mutual confidence and a respectful dialog between caregiver and professionals about the tasks.
This project was prompted by questions from our daily clinical work asking to what extent to involve family caregivers who are able and willing to do extensive medical and physical care in palliative settings at home. It is often asked among professionals if it might be harmful to relatives coping with bereavement to take on the strain and burden of heavy practical involvement in palliative care. We feel that such discussions among our research team helped enhance our explorative awareness of the respondents' experiences and did not alter the results of the study.
AW chose two of her own patients' spouses, both having been active in medical and physical treatment. This might have led to altered results but as stated in the method section, these two interviews did not differ from the others in the analytic phase and were therefore included in the ultimate analysis. If a more profound analytic approach than Qualitative Description were chosen it might have had more importance. The use of GPs as mediators and henceforth their selection of respondents could also have altered the results and led to too early data saturation than a more open strategic sampling. On the other hand, we found that the information was so robust and uniform that we think our results are qualitatively representative of experiences among caregivers assisting with palliative care at home. Furthermore, this use of GPs as mediators helped us in the ethical considerations about contacting spouses one to three years after bereavement.
The study consist of a small number of respondents, but in an explorative and descriptive study like this we believe that the outcome is still applicable to daily clinical practice, but naturally estimates can not be given on the quantitative distribution of different experiences among spouses and further research will be required before we can give general guidelines to professionals in palliative home care.
Several studies have looked into the psychological implications on family caregivers in bereavement generally, without a focus on active involvement. It has been found that caregivers seem to cope better if sufficient support is provided during the palliative stage of disease at home. The most important issues seem to be good communication [5, 6], well organized shared care , information about the disease  and nursing skills , accessibility to staff and their competence [8–12, 22] and the caregivers own health and social network . Home deaths are shown to be associated with both better bereavement response and better physical health post-bereavement than were inpatient deaths  and it has been shown to be important to have been doing something for the loved one who died [2–4]. This is in line with information from our caregivers. The manner in which the health care workers act towards the patient and relatives influences relatives' possibilities for involvement . These implications were also found in our study.
Literature has shown that active involvement of family care givers could be harmful [2, 13, 23–25] and that the relatives experience an unspoken pressure from the professionals to be 'professionals' rather than loving relatives , but also that it makes bereavement easier [3, 4, 8, 10, 26]. In our study it seemed to be beneficial to be allowed to participate in medical treatment and physical care. It made life easier and less dependent on the schedule of professionals, which could otherwise have tied spouses to their home during specific times. Therefore active involvement may allow more room for being a loving relative, rather than limiting this room.
Hence, a natural question could be: "Why does active involvement work for some caregivers and not for others?" This question was not answered by earlier studies to our knowledge and it seems to be an under-researched topic. There is a lack of knowledge about how being active in treatment and care during the palliative course affects the quality of life and bereavement response of family caregivers compared to those not active in treatment and care. More research in this field is essential. However, we found some pre-conditions that seem important to enhance a positive outcome. Our study emphasizes the importance of communication, respect and accessibility.
It seems important that palliative health care workers and GPs receive good basic, vocational and continuing medical education in communicative skills in palliative care and in active dialog with caregivers.
The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The main categories were: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked). The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.
The authors would like to express profound gratitude to all respondents for participating and the GPs who helped us identify potential respondents.
The study was funded by The County of Aarhus and PLU (The General Practitioners' Foundation for Education and Development).
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