Bereaved cancer carers’ experience of and preference for palliative care
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- Sekelja, N., Butow, P.N. & Tattersall, M.H.N. Support Care Cancer (2010) 18: 1219. doi:10.1007/s00520-009-0752-x
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The importance of addressing carers’ needs is becoming increasingly recognised. Cancer patients’ carers are identified as a vulnerable population with many unmet informational, emotional and practical needs, particularly during the palliative and end-of-life phases of care. During these phase of illness, patients and carers face the imminence of death and require additional support such as that provided by palliative care services. There is little research on carers’ views regarding optimal timing of palliative care referral and the utility of palliative care services. This study aimed to explore bereaved carers’ experience and understanding of palliative care and their views on optimal timing of first contact.
Thirty bereaved carers of patients with metastatic cancer who had previously participated in a randomised controlled trial of early referral versus standard access to palliative care services were interviewed via phone. The interviews were semi-structured, audio-taped and transcribed. Sampling ceased when information became redundant. Interpretive Phenomenological Analysis methodology was used for data analysis.
Five major themes were identified: meaning of palliative care, timing of palliative care, valued aspects of palliative care, preparation for the patient’s death and the role of palliative care in preparing for and after the patient’s death. The results show that bereaved carers of cancer patients define the meaning of palliative care in terms of its function and associate it by and large with end of life. Carers were grateful for the support received from palliative care, but acknowledged its limits. Carers most appreciated the practical help and the respect that the palliative care team showed. They generally recommended that palliative care be introduced when patients need help at home or when symptoms become difficult to control rather than as soon as patients are told that the cancer is incurable.
This study has provided information on the meaning of palliative care to carers who have had the experience of caring for a patient who died. Carers were uncertain about the role of palliative care and associated it with end-of-life care. Education could help de-stigmatise palliative care and reduce misgivings regarding its introduction.
KeywordsCancer carerEnd-of-life carePalliative care
For most patients with incurable cancer, there is a period of suffering with physical symptoms and awareness of death approaching. In the last 6 months of life, the goal of treatment is palliative and the most important outcome is quality of life . This period represents a major challenge for both the patient and the person taking primary responsibility for caring for the patient.
In addressing the needs of dying cancer patients and their carers, palliative care or hospice care providers are invoked for their expertise in symptom management, end-of-life issues (e.g. preparation for death) and bereavement. The World Health Organisation (2002)  defined palliative care as: “the approach that improves the quality of life of families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
Specialist Palliative Care Services began in Australia in the 1980s and developed rapidly  into diverse models of care . Palliative care is provided by palliative care specialists (doctors, nurses and other health professionals with special training) as well as family physicians and nurses. Palliative care is practised in hospitals, hospices and in the home or community-based palliative care .
Patients are referred to hospice care usually 1 month before death . The optimal referral time of cancer patients to palliative care is not known. The WHO 2002 guidelines  state: “Palliative care is required for many patients early in the course of their disease, sometimes from the time of diagnosis. It should not be associated only with terminal care”. Nurses view early contact with palliative care services as essential in establishing trust in the patient and their family and acceptance of the nurse . It is suggested that many cancer patients receive palliative care too late in their disease trajectory to benefit from it ; however, little is known about the views of patients and carers about this issue. In one recent study in Japan , of 630 bereaved family members of cancer patients admitted to palliative care units, half the carers thought that palliative care was introduced late or very late and less than 5% reported early referrals. The carers by and large reported that earlier inclusion of palliative care would be helpful.
In Australia, it is not known when or what proportion of patients approaching death are referred to palliative care. The aims of this study were to investigate how bereaved carers of cancer patients, experienced palliative care during the patient’s illness and after the patient died, and to explore carers’ subsequent preference for palliative care contact. No hypotheses were tested as this was an exploratory study.
A qualitative methodology was chosen for this study because of the lack of literature on this topic, its complexity and personal nature . Semi-structured interviewing allowed a more flexible questioning on the topic than the conventional structured interview, survey or questionnaire. While the focus of the interview was decided by the researcher, the objective was to understand the carer’s point of view. To this end, carers were given the time and scope to talk about their views. The researcher tried to build a rapport with the carers and allowed them to talk freely about a topic. The researcher asked about issues of interest to the study which were not included in the interview.
Subjects in this study were main carers (lay and unpaid) of 30 cancer patients who had, in the last 1 to 2 years of their lives, participated in a randomised controlled trial (RCT) investigating early versus standard referral to a palliative care service in two major teaching hospitals in Sydney.
At the time of recruitment to the original RCT, patients had incurable, metastatic cancer of the breast, lung, ovary or colon with a 6–12-month life expectancy and had not had contact with palliative care. Consecutive patients of participating oncologists who fulfilled these eligibility criteria were invited to participate in the study as soon as possible after diagnosis with incurable disease. Patients without adequate English or who were too sick to complete questionnaires were excluded.
Once recruited, patients were randomised to either meet a palliative care nurse immediately or to continue care with the oncologist with subsequent involvement of palliative care contact based on perceived need. Those randomised to early palliative care were contacted by a clinical nurse consultant who arranged to see them either face-to-face or if this were not possible, by phone. She introduced palliative care and explained its role and function, offered her services as a point of contact, assessed psychosocial and physical needs, provided resources, education and support if necessary, and triaged to other members of the palliative care team (including the specialists) where necessary. On average, she maintained monthly contact (face-to-face or by phone) with the patient until death. Carers were not participants in the RCT and they were in contact with palliative care through the patient. Information relating to patient contact with other allied health professionals was obtained as part of the RCT and did not form part of the present carer study. Patient-related data are not reported as part of this study.
Procedure: carers study
A separate ethics approval was obtained for the carer study from the relevant research ethics boards at the university and the hospitals. Carers received an expression-of-sympathy letter from the patient’s oncologist, which also introduced the study, on average 3 months after the patient’s death (range 1–12 months). The letters to carers enclosed a copy of the interview questions. Carers who did not opt out were contacted to arrange a telephone interview. Telephone interview was chosen as a more cost-effective and convenient option. Telephone interviews are thought to increase anonymity and decrease social desirability responses . Moreover, it was judged as a sufficiently effective tool to gain factual as well as affective information about the subject when compared to face-to-face interview . The interviews were conducted by the first author, a psychologist trained in communication with bereaved carers. If needed, the author directed carers to the palliative care bereavement service. Sampling was ceased when information became redundant (i.e. when no new themes emerged in three consecutive interviews). Interviews took, on average, 30 min (range 11–84).
Patient and carer demographic details
Mean (range) or median
Time PC contact established before deatha
Median = 2 weeks
Time PC contact established before deathb
Median = 3 months
Time since death to carer interview
Median = 5 months
Place of death
Carer relationship to patient
Other (niece, friend, d/s in law)
The interviews were audio-taped, transcribed and coded. Interpretive phenomenological analysis (IPA) was used . This approach assumes that what the respondent says about a topic has some, although not completely evident, relationship with the beliefs that they hold about it . It is assumed that what the respondent says has some significance to them. At the same time, the approach is also interpretive, meaning that the focus of analysis is on the point of view of the experiencing person searching to reveal how they construct their experience through beliefs, feelings, intentions and actions . IPA was chosen because it allows close exploration of each case and the interview data are subjected to detailed qualitative analysis—attempting to elicit the key experiential themes in the respondent’s account. The method involved three researchers first reading the transcripts independently a number of times to become familiar with them and identify emerging themes in order to ensure consistency and reliability of the ensuing categories. Then, the researchers considered each transcript in turn, discussing openly their interpretation of it and looking for connections between the themes to form superordinate categories.
Carer demographic characteristics
Forty three carers were approached. Ten carers were not contactable and three refused due to lack of interest in the study (response rate: 69%). Characteristics of the 30 participating carers and the patients they had cared for are shown in Table 1 including patient age, timing of palliative care contact, time since patient death, place of patient death, carer gender and carer relationship to patient.
When responses were compared in carers of patients in either arm of the RCT, there were no clear differences.
- 1.For whom is PC relevant
When there is ‘no hope left’
For the last weeks of life (for patient and carer)
For someone requiring extra help at home
For someone with a terminal illness
- 2.Negative response to PC
Forces consideration of end-of-life issues—sometimes pushes patient too fast—forces focus on dying not on living, no hope left
Stigmatised (by way of being for end-of-life or as last resort)
Lower quality of life
- 2.4Poor quality services
Patronising to patient
Poor psychological assessment
PC did not provide the type of care needed/wanted
PC did not inform of all services available (hospice)
PC not good at dealing with cultural differences (language barrier)
PC did not explain who they were in hospital
Nurses cancelling appointments
No need for PC to start with so not helpful
- 3.Positive impact of/services provided by PC (valued aspects of palliative care)
- 3.1Home Care
Helped keep patient at home rather than hospital
Helped allow patient to die at home
- 3.3PC team’s supportiveness
Personal qualities (caring, indispensable, respectful)
- 3.4Symptom control
Medication provision (symptom control, pain relief)
Dealing with symptoms in non-medical ways
Keeping the patient comfortable/ease the suffering
- 3.5Practical support
Transport between hospital and home
Additional needed facilities/equipment set up at home
Help with bathroom tasks
- 3.6Information provision
General information and advice about patient’s illness
Answered any questions
Teaching carer skills (e.g. change of dressing)
- 3.7Psychological support/counselling
Reducing patient’s and carer’s distress
Takes some responsibility away from carer-relief
- 4.PC Timing
- 4.1When to introduce
- 4.1.1Sooner rather than later
To get used to it—familiarity with the PC nurses made accepting help easier later
Nothing to lose (can never start too early to get info and support)
When tumour recurs or when told it’s terminal
When care at home is needed (when patient becomes immobile)
When patient needs it (when symptoms suggest)
When patient is ready to discuss end-of-life issues—when there is no hope
- 4.2Issues in introducing PC
Availability of P/C bed within hospital
No consideration of choice in timing of PC (lack of knowledge)
Lack of acceptance of patient’s imminent death
- 5.End-of-life issues
- 5.1Carer and patient coping with end of life/death approaching/terminal phase
Having a fighting spirit (being positive, mutual denial, making jokes, brave front)
Alleviating guilt (being able to take leave off work)
Using complementary care (massage therapy, meditation)
Communicating with others
Spending quality time with patient
Family and friends support
Not discussing death (for pt’s sake, to stay positive/hopeful)
Discussing death (to allow honest communication)
- 5.2Preparing for patient’s death
Nothing can prepare
A sense of suddenness (even when know prognosis or can see the deterioration)
- 6.PC impact (preparation for and after the death)
- 6.1In preparation for death
PC cannot help prepare for death
PC appreciated by the carer but only so much they can help with
- 6.2PC help during the dying process
Eases the situation (by keeping the patient comfortable, their understanding, their calm)
Specialist medical knowledge helps know what to expect at different stages (at the moment of death)
Discussion and planning of end-of-life issues (burial/cremation, spiritual issues addressed)
Dying process was humanised
Hospice care helpful (provided the help family unable to give at home, made it possible for friends and family to visit the patient)
- 6.3PC unable to help during the dying process
Helping requires family inside knowledge
- 6.4PC help for coping afterwards (bereavement)
PC unable to help for coping afterwards (no one can help)
PC continuous holistic support
PC did not try to help (no contact afterwards)
Meaning of palliative care
Carers defined palliative care primarily as a service used by people with a terminal illness (mainly cancer) or for someone requiring extra help at home. Otherwise, they specified the time of need such as “for the last weeks of life” or “when there is no hope left”.
… to see if their, their needs were met as far as…well…the care that was given through the hospital … whether maybe there was some sort of extra need within their household … for additional facilities to be set up for them and that kind of thing.
Um, well I think it’s sort of…to do with like, really homecare and um possibly getting the patient to and from Hospital and things like that. I’m not too sure really.
Well like, what do you mean exactly? Like what I understand of it, is care outside of Hospital where they come and visit you ah for a short period of time. Help you with…whether you need a shower or not.
Well my understanding was it was…pain release when there weren’t any other options. Or palliative care was actually an on-going thing to do with pain treatment relief.
Extent of contact with palliative care services
Carer reports and information from palliative care services on palliative care contact differed somewhat. Contact was confirmed for all but two patients through local services. According to carers, however, only 23/30 patients had contact with palliative care. Carers reported that four patients had deteriorated too quickly, and for the remaining three patients, the carer did not know why there was no contact. According to carers, the median time of initial contact with palliative care services was 2 weeks before death, while that reported by palliative care services was 3 months (see Table 1. above).
I mean I wasn’t really informed properly … until … they came to the house. She gave me all the numbers and things like that. But when I was in the hospital they came and talked to us …. But I didn’t know they were palliative care people.
Preference on timing of palliative care
Of those who reported having contact with palliative care (n = 23) almost all (22/23) reported that palliative care was timely. After 13 carers were interviewed, it was decided to ask directly whether palliative care should be introduced early when cancer is first found to be incurable or later when there are difficult symptoms and patients need help at home. Six of 17 carers asked this question preferred palliative care to be introduced early, because: “you can never start too early to get information & support”, “…it’s reassurance that somebody understands”, “it is OK if the patient has accepted death or not hoping for a cure”. Eleven carers preferred later introduction of palliative care: “When there is no hope”, “When the patient is ready to discuss end of life issues”, “…but not when the patient is completely helpless”.
Carers acknowledged that patients might be alarmed by the idea of needing end-of-life care if they have not “accepted it (the death approaching)” and that this acceptance varies between individuals. However, they also saw benefits. For instance, “to get used to it”, “nothing to lose”, and “familiarity with the nurses assists in the patient accepting help easier when needed”.
I honestly think it would depend on the individual person. You know, like some people can be affected in their mind by having it told they’ve got an incurable cancer. Some people probably handle it in different ways … she (patient) handled it quite well … I think she just accepted it.
I think, oh I don’t know. See again it depends on the individual. I mean with (patient), if you’d introduced her right up front. She would have just said, no I don’t need that and all the rest of it. So from a psychological point of view it just, you know, it just depends on the individual, I think, whether they accept it or not. Not, right up front. Um I don’t think (patient) would have. I think um, I don’t know whether individuals need there own time to sort of. Come to terms with it. But then again, some people might need it and some might not.
Valued aspects of palliative care
It was actually something for her to look forward to ... it enabled me to sort of say look we’ve got to have a shower … get ready because …you know (nurses) will be here, and so it gave her actually something to do, and to look forward to and a reason to get up and get dressed ...
Um, ah yeah they were. I mean as I said they were all very nice and they were, they um. You know, they, yeah they were. They were good. They um, they talked to us. They talked to my Mum. She was down there you know, when I was at work she was there.
And ask them and you know, and if I didn’t know anything. They said all the time if don’t know anything, if you are worried you can always ring up…… Well for me, it was, palliative care was excellent. You see we could, we got all these phone numbers here what we could ring and if he. You know if he turned real bad and all that or suddenly, you don’t know.
At 2 o’clock in the morning…things like that and towards the end there when the palliative sister put the cannula in his chest and I had to put the stuff into that, you know, he knew that I was very nervous about doing that.
I think he was more worried that, that the term ‘palliative care’ sort of drove home the point that he was in fact dying.
Although carers appreciated the team’s supportiveness only a small number of them mentioned the psychological support and counselling provided to them and to the patients.
End-of-life issues, preparing for patient’s death and the role of palliative care
Twelve carers reported feeling prepared for the death. Of these, four felt palliative care helped in preparation: “They (the palliative care team) eased the situation”, “…(the palliative care team) kept him comfortable”.
Eighteen carers did not feel prepared. They said that nothing helped in preparation: “Impossible to prepare”, “Even when you know, it’s a shock”.
I think I was probably thinking, even when he started to really go down hill quickly I still felt that it was something that it was going to happen further down the track. And actually it happened very suddenly in the end, you know … I don’t really think I was prepared for it at that time, no.
I:…did you feel prepared for the period of (patient’s) dying. C: Oh I don’t think it’s ever been, no. I: You didn’t feel prepared? C: No. I: Mmmm, actually it’s hard to feel prepared for something like that isn’t it. C: Yes.
And so probably a bit like the ostrich with my head in the sand a little bit thinking … and in fact he survived two months longer than the surgeon said he would in the first place. He gave him 12 months and, and we had him for 14 months.
We knew it was going to happen but I don’t know if you could be prepared for it. I don’t know what even they could do to prepare you for that. Yeah, look I don’t, they did everything they could but I don’t know if you can be prepared to do that. I: Do you think that contact with the palliative care service helped in anyway in preparing for her dying? C: Oh it certainly helped, but it’s a pretty big job to prepare somebody … I don’t really know what else they could do.
I: … did contact with the palliative care service in any way help prepare you for the period of (patient’s) dying. C: No, although it did, just having him in the palliative care bed with the team around um helped keep it as comfortable as it could be for us as well.
No we done everything that we possibly could to make everything fine for him. He never asked for anything um, if he ever did we’d make sure that went and got it for him.
Yeah. And did you have any contact with the palliative care team afterwards, after he died. Um actually ah the nurse herself…came around a couple of times to see my mother.
Well they were sort of there. They came in and saw us and ah and they were there after she had died. And um, stayed around and gave us cups of tea and um were very helpful. Yeah.
Dissimilarly, others felt that palliative care was unable to help afterwards and that the care that was given while the patient was alive was sufficient.
This study investigated the views of bereaved carers who looked after cancer patients regarding the contribution and ideal timing of contact with palliative care. Carers associated palliative care with home care that continues from the hospital. Home care has been identified in other studies  as a highly valued aspect of palliative care by carers and patients as it offers needed assistance and support in keeping the patient at home.
Many bereaved carers of cancer patients viewed palliative care as being for ‘the last weeks of life’ or ‘when there is no hope left’. Previous studies have reported similar views of nurses and physicians [21, 25] and recognition of the stigma attached to palliative care .
Health care professionals and researchers suggest earlier referral would be more beneficial to provide support and to reduce emotional and spiritual needs well in advance of their death and to establish trust in the patient and their family and acceptance of the nurse [1, 2, 18].
Views on the best time to introduce palliative care were divided in carers’ reports. Some believed it should be introduced early, mainly to provide additional support and to facilitate the patient getting used to the nurses, but the majority believed it should be introduced later, particularly to avoid the consideration of end-of-life issues. The most emphasised factor in introducing palliative care was patient’s acceptance of their situation and the impending death. Non-acceptance was seen as a major barrier to the introduction of palliative care.
Our findings are in contrast to those of a much larger study in Japan on bereaved carers’ views of timing of palliative care  where the majority favoured earlier referral. This may reflect cultural differences in attitudes to death and dying, or the provision of palliative care. Exploration of the factors determining preferences for early versus later introduction of palliative care should be explored further in future studies.
Central to participants’ experience of palliative care was a general appreciation of the care offered as well as specific aspects of care such as home care, the follow up and their caring and understanding approach. The finding that palliative care recipients appreciate the basic communication and relational aspects of care, such as health professionals understanding their situation, has been reported in other studies .
Respondents found information about the patient’s status and education on practical aspects of caring such as wound dressing, very useful. Carers valued the information provided to them on the status of patients’ health which helped them in knowing what to expect, especially during the dying process. Other studies have found that carers’ greatest needs were informational [5, 10]. In Clayton et al.  carers reported needing to know what to do in case of complications, particularly closer to the time of death as a major need. In a study by Rose , qualitative data analysis showed that carers’ key needs’ area was informational, relating to the patient’s illness and prognosis.
The respondents in the current study found the palliative care teams’ instrumental support most useful as well as home care and these features were much more prevalent than their appreciation or identification of psychological support. In fact, one carer noted that helping in a psychological sense required family insight and that only the closest people could provide this. That the carers should focus on practical support is in keeping with some previous research on carers’ views  in which practical information was very highly rated, only second to communication between carers and patients. Practical support has been found to be very important at the end of life and carers have reported feeling useless and helpless when they were unable to provide practical nursing support . Perhaps the lack of emphasis on psychological support stems from the fact that experiencing the death of a loved one is so traumatic that the support offered seems inadequate by comparison. There was a general view from carers that ‘no one can help’. Perhaps this effect can be explained with Maslow’s Hierarchy of Needs Model  where people are said to be unable to attend to higher level needs such as psychological health if their basic physical needs have not been satisfied. In this case, the patients’ physical needs took precedence over carers’ psychological needs.
Carers in the current study revealed that preparation for the death of a loved one is impossible or extremely difficult and that palliative care could not help. Glaser and Strauss  put forward a theory to explain their findings on the different levels of awareness and its relationship with knowledge. They suggested that being informed is not synonymous with being aware. Likewise, even with the awareness of the imminence of the patient’s death carers may not necessarily accept the situation or feel prepared. In the carers’ narratives, it appears that while they were aware and knew the patient was dying, they nevertheless felt unprepared. The carers conveyed that despite knowing the patient was dying ‘only one’s own acceptance can help with the death’. Thus, according to the carers in the present study, acceptance is the main factor in determining how prepared a carer will feel and knowledge and awareness can only help to a degree.
There was the potential for bias where the carers whose patients were in the early referral group could have been better informed about palliative care compared to the carers whose patients were in the standard referral group. This may have skewed the views of the one group compared to the other group of carers. However, as the results indicate, many carers were not aware that they were having contact with palliative care and there were no marked differences in the views of the two groups of carers on palliative care.
An important limitation of the current study is that palliative care providers’ input varied. As acknowledged in the “Introduction” section, there are various providers of palliative care service and a hospital consultation service is only one aspect of this provision. Palliative care can be provided in hospital, hospice or at home (such as community care) and it usually involves a multidisciplinary team caring for the patient simultaneously. The randomised controlled trial in which the patients participated controlled for the timing of first palliative care contact through a controlled consultation liaison intervention through a hospital service. The difference between carers’ reports and information obtained from various palliative care services after patients’ death suggests that both groups of patients (and carers) received support from various palliative care services and that carers were not completely aware of from whom they received support. Future studies will need to control for these factors. Another limitation is that carers’ prior experience of palliative care was not recorded which may have affected carers’ expectation of palliative care.
Timing the interview to occur after the maximal bereavement response
Training of the interviewer by a bereavement counsellor
Informing participants that they could stop the interview at any time
Ensuring appropriate referral if the participant became distressed and requested further help
Summary and clinical implications
In summary, many carers saw palliative care as being only for the end of life or when there is no hope left. They believed that the timing of contact with palliative care is largely dependent on individual preferences but mostly on patient’s acceptance of the impending death. Carers valued palliative care nurses’ practical assistance, information provision and their niceness. Carers neglected their psychological needs as they focused on helping the patients in every way and find that process rewarding. They did not see palliative care as helpful in preparing them for the end of patient’s life.
This sample of bereaved carers may have been affected by memory bias as they were interviewed 1–12 months following patient’s death. This could have affected their memory of support and difficulties faced in the caring process. There was the potential for bias where the carers whose patients were in the early referral group could have been better informed about palliative care compared to the carers whose patients were in the standard referral group. This may have skewed the views of the one group compared to the other group of carers. However, as the results indicate, some carers were not aware that their patient was having contact with palliative care and there were no marked differences in the views of the two groups of carers on palliative care.
The current study indicates that patients’ views are important as carers’ reports emphasise individual differences in needs and views of patients who are dying. Future research should investigate the views of patients on the optimal timing of palliative care contact and examine whether carers need to be better prepared for the death of the patient.
The findings of the current study also indicate that carers of cancer patients are uncertain about the role of palliative care in the lives of patients, carers and the family. Education could help de-stigmatise palliative care and reduce misgivings regarding its introduction.