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Loss, transition and trust: perspectives of terminally ill patients and their oncologists when transferring care from the hospital into the community at the end of life
  1. Clare Smith1,
  2. Nick Bosanquet2,
  3. Julia Riley1 and
  4. Jonathan Koffman3
  1. 1 Royal Marsden and Royal Brompton Palliative Care Service, Royal Marsden NHS Foundation Trust, London, UK
  2. 2 Imperial College, London, UK
  3. 3 Department of Palliative Care, Policy and Rehabilitation, King's College London, Cicely Saunders Institute, London, UK
  1. Correspondence to Dr Clare Smith, Royal Marsden and Royal Brompton Palliative Care Service, Royal Marsden NHS Foundation Trust, Fulham Road, London SW3 6JJ, UK; clare_smith_78{at}hotmail.com

Abstract

Introduction Most people prefer to die at home. However, most continue to die in hospital. Little is known about the impact on the patient of transferring care from acute sector specialist follow-up to the community. In one cancer centre, a new service—Hospital2Home was set up to facilitate this transfer of care. This study aimed to explore patients’ and oncologists’ perspectives of the meanings involved in this transition.

Methods Qualitative study using semistructured one-to-one interviews with 8 terminally ill cancer patients and 13 oncologists. The interviews were audio recorded, transcribed verbatim and analysed using the framework approach.

Results 3 main themes were identified: loss, transition and community care. The theme of loss referred to losses associated with the end of treatment and losses associated with the familiar safe relationship between the patient and oncologist. Transition refers to the change from hospital-led to community-based care. Barriers to transition included patient and family acceptance, attachment and concerns about community services. Transition was more acceptable if initiated in a gradual manner. Community care: participants found the Hospital2Home service crucial in establishing new trustworthy relationships between community providers and the patient.

Conclusions Transfer of care from the acute sector to the community represents a delicate crossroad where complex notions of loss should not be underestimated. A gradual transfer of care may improve this if the patient's condition allows. Therefore, introductions to the community team should be timely, and a staggered transfer should be planned. This would improve the experience of the patient, carer and oncologist.

  • Cancer
  • Communication
  • Transitional care
  • Home care

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Introduction

Worldwide, the majority of people would prefer to die at home.1 ,2 However, in the developed world, most die in hospital.3–5 Government policies across the globe aim to address this mismatch.5 ,6 The Council of Europe and WHO recommendations point to the importance of developing quality indicators for palliative care.7–9 Quality end-of-life care indicators are complex to define and measure. However, dying in a place of preference (PPD), most commonly home, is often described as an important end-of-life aim.10 ,11 Patients, families, health professionals and policymakers all judge this outcome to be a central issue.12–14

In the UK, 53% of deaths occur in hospital.15 The UK NHS end-of-life care strategy emphasises the importance of enabling patients to be able to choose where they die.16 In order to realise this goal, care must move from the acute sector to the community. Community-led care has been a global initiative for more than a decade.17 The rationale for driving care into the community is consistent across countries: delivering care closer to home, increasing patient choice and addressing the needs of an ageing population.17 The emphasis on community-based care means that more specialists are encouraged to discharge patients to community services where appropriate. However, what remains unknown is the impact of the discharge from specialist services on the patient experience. This knowledge would support improvements in current service integration across care settings.

In 2007, a new service, Hospital2Home, was set up to facilitate the effective discharge of patients from a tertiary referral cancer centre into the community. The main aim of the service is to improve care coordination and increase the number of patients dying in their PPD.

The Hospital2Home service is offered to patients with advanced cancer, who have no further oncology treatment options, and a prognosis of <1 year. Patients are offered an advance care plan meeting in their home. Healthcare professionals from the cancer centre and the community team meet with the patient and family, where responsibility for the patient's care is then handed over to the community team. The outcomes of this meeting (known as a Case Conference) are formalised in a care plan. A prerequisite to referral to the service is that the oncologist discharges the patients from follow-up at the cancer centre.

This study, therefore, aimed to explore, for the first time, the views and experiences of terminally ill patients with cancer at a critical moment in their lives to compare these accounts with the views of their oncologists when discharging them from specialist services, using the Hospital2Home service (see table 1). These perspectives may be useful in helping to guide the development of transition strategies that are successful and acceptable at this important crossover of care.

Table 1

Study aims and topic guide for participant interviews

Methods

Study design

Given that the transition from hospital to home has the potential to be highly complex, we adopted a cross-sectional qualitative approach to explore this previously under-researched area of healthcare.

Setting and participants

This study was located at the Royal Marsden NHS Foundation Trust (RMFT). The RMFT is a tertiary referral cancer centre based in London, UK. The RMFT treats 50 000 patients with cancer each year, of which ∼2000 die.

Study inclusion criteria included adult patients aged over 18 years who had experienced a Hospital2Home case conference, were able to understand and speak English fluently, and possessed the mental capacity to consent to an interview lasting between 30 and 45 min.

We used purposive sampling techniques to address our research aims to identify and then select a diverse population of patients with respect to their age, gender and cancer type. Further care was taken to interview participants who had been previously known to community services and those who had not. Oncologists were selected from two groups according to whether they were regular referrers to the Hospital2Home service or not. To obtain a broad perspective, oncologists were interviewed about their general experience of discharging patients at the end of life rather than an individual patient participant's discharge. We note that the number of participants in this study was relatively small (eight patients and 13 oncologists) but is consistent with the methodological literature concerning qualitative research.18 Sampling strategies in qualitative studies are not designed to achieve statistical generalisation or test hypotheses. Instead qualitative research takes an inductive approach and involves the in-depth study of the range and complexity of meanings and phenomena relevant to the research question, with the aim of providing explanations and conceptual generalisation.13

The study was approved by the Central London Ethics Committee (ref: 10/H0718/24). All participants provided written informed consent prior to being interviewed.

CS, a palliative care doctor trained in qualitative research methods, conducted all interviews. The interviews were informal in style, and loosely followed a topic guide that guided by review of the literature. A patient representative reviewed this topic guide and made suggestions to modify questions and ensure they were acceptable. Earlier interview responses informed the emphasis of subsequent interviews, and prompts were used throughout all interviews to elicit further information. Selected questions appear in table 1.

The interviews varied in length between 23 and 65 min. All except one patient interview were conducted in the patients' own homes. All oncologist interviews took place at their workplace.

Data analysis

The analysis sought to identify emerging themes and to explore their relationship across the study participants. All interviews were transcribed verbatim, anonymised and analysed using the framework approach with the aid of QSR Nvivo (V.10.0).19 This approach involved developing a thematic framework through the repeated reading of the transcripts. CS indexed data and summarised sections within the framework. This facilitated detailed exploration of relationships between themes within and across cases.

To address issues of analytical rigour, a subset of transcripts were dual-coded by JK (a medical sociologist with 15 years experience in palliative care research). A reiterant process of discussing areas of agreement and disagreement took place to achieve consensus. Attention was also paid to deviant cases where emerging themes contradicted more common ideas.20 We have made some use of numerical counting as this can help to clarify patterns emerging from the data.21 Excerpts from the transcripts are presented to illustrate emerging themes. Pseudonyms are used for all participant names.

Results

Thirteen patients were approached during the course of the study. Five declined to be interviewed: three felt too unwell, two declined due to time constraints. Fifteen health professionals were approached to participate of whom 13 agreed to be interviewed.

Tables 2 and 3 summarise the characteristics of each group. Patient participants were aged between 62 and 91 years. Patient participants survived a median of 34 days after interview. All patient participants were white with 7/8 white British of ethnic origin. The majority of oncologists (10/13) had over 10 years' experience in their field.

Table 2

Patient characteristics (n=8)

Table 3

Consultant oncologist characteristics (n=13)

Findings

Three main themes emerged from the interviews that encapsulate patient and oncologist views: (1) loss: a theme that refers to making sense of the inexplicable, and in particular, the experience of the last consultation between the patient and oncologist; (2) transition: a theme that encompassed the emotional complexities of the discharge process; (3) community care: which refers to the experiences of the case conference and community-based care. Tables 4 6 give details of the analytical framework, themes and subthemes with example quotations from participants.

Table 4

Analysis framework and illustrative quotes: loss

Table 5

Analysis framework and illustrative quotes: transition

Table 6

Analysis framework and illustrative quotes: community care

Loss—the last treatment consultation

This theme refers to the consensus among participants that the act of ending treatment was inexorably associated with loss to patient and oncologist. We understand loss as the disappearance of something valued, as well as being associated with the dramatic reshaping of patients' realities. Two main areas of loss were identified: losses due to the termination of treatment and losses associated with breakups of trusted relationships between patient and doctor.

Seven patient participants recounted that their experiences associated with ending their active treatment constituted a deprivation of hope and future. This event brought with it a range of complex negative emotions including shock, disappointment and a degree of resignation. Mark, a 62-year-old man with metastatic lung cancer, typifies these sentiments:I was very disappointed, I was hoping during the treatment for a year, (I was) looking (for a) green light as something to encourage me and (the oncologist) to do the rest of the treatment, with a little bit success, at least. It's terrible experience. (Mark, 62 years)

Although the majority of patient participants (see table 4) described discharge as negative and disappointing, one, a 64-year-old woman treated for 4 years for metastatic ovarian cancer, paradoxically described her new reality as representing liberation from treatment. She said:I was on the merry go round if you like so when I had the opportunity to get off it, having had I suppose nearly 8 months without any treatment apart from um hormone pills, um, that was sort of like life back to sort of normal really. (Diane, 64 years)

Loss of familiarity and security

Both patient and oncologist allude to the notion of the cancer centre acting as a virtual community. The accounts revealed an over-riding sense of loss of familiarity and security when the oncologist–patient relationship ceased. Patient participants told of the close relationship they had with the oncologist, and the upset caused by not seeing their oncologist again.

Tim's narrative depicted a bond that extended to areas of life well beyond his illness:I mean he’d be perfectly happy to take the call (referring to the oncologist receiving a telephone call from Tim), he definitely would be quite pleased, because, we usually have a chat about golf or fencing or something like that. (Tim, 64 years)

Oncologists too acknowledged this important bond (examples are given in table 4). Dr Jones, an oncologist for over 15 years, reported this as a difficulty with regard to ending treatment:If you know patients for 15–16 years, and then you've seen them for example, many many times during the year, and although you have the role in the relationship, patient and doctor, but it tends to be that they explain you know things of their life, you know my sister has 2 kids we celebrated that, and you get involved in the life and know better the whole family in fact, just not only the patient. Knowing this whole background is more difficult and you feel more close to the patient, and of course you feel bad. (Dr Jones)

Transition

The second theme that emerged related to the situation of ‘transition’. We interpret transition as a period of change from one state to another. Here it specifically relates to the discharge process, a period of change from hospital-led to community-only care. This theme comprised two subcategories: barriers to transition and management of transition.

Barriers to transition

There were two main barriers to transition evident from the analysis: lack of acceptance and attachment. The ability of patient participants to accept a change in their situation appeared to strongly influence their willingness to agree to discharge. However, we identified a range of sentiments that portrayed their styles of acceptance (table 5). For example, Diane, a 64-year-old patient living with metastatic ovarian cancer stated:I’ve been a palliative care ever since I first arrived, which was 4 years ago because I knew that this (referring to her cancer) would go hand in hand with, where we are now really…. um I’m not going to get any better, and the symptoms that are uncomfortable are being made as comfortable as possible, for the remainder of my life. (Diane, 64 years)

However, Tim, a 64-year-old man with colon cancer, inhabited a more ambivalent position of reluctant acceptance and a hope of some reprieve. He explained:One's concerned that the disease will, er, develop and eventually finish me off you know, that's the bottom line. I think nobody is saying that it will, but you know, the obvious conclusion…. (but) there's always a hope that something might come up, that they would get onto me and treat me. (Tim, 64 years)

Analysis of the oncologist interviews identified correspondence with these sentiments, although pointing out that difficulty in acceptance was often more pronounced among family members than the patient. Dr Hartup illustrates this:Some patients just aren’t prepared to hear that, and actually, sometimes it's not the patient actually it's the relatives, that's the hardest bit. The patients in my experience are, they’re the ones that cope with side effects of chemo, they're the ones that you know, know what it's all about, and my impression is that the patient's generally ok, it's the relatives who fear losing the patients, that find it difficult. (Dr Hartup)

Attachment typically refers to an affection or fondness for someone or something. In our interviews, attachment was identified as being closely linked to the theme of loss of familiarity and security. Attachment was recognised as a barrier to discharge (see table 5). Dr Wood portrays this, when she explained that the strength of attachment was often conditional on the length of the relationship with her patients:I don’t say no you can’t do that (referring to returning for a follow-up appointment) because, in a way looking after them holistically as a person, weaning them off the care, is part of the process because it isn’t just looking after them physically, psychologically they just couldn’t cope with that. I find it's more of a problem with patients you’ve looked after for a very long time. If you’ve looked after people for a much shorter time I think, maybe they have less time to sort of form a bond with the unit. (Dr Wood)

Management of transition and discharge

Transition from care setting (hospital) to care setting (community-only care) was viewed as requiring a gradual phased approach to handover care effectively. Preparation was identified as one of the key factors in acceptance. For example, Dr Khan recognised the importance of sensitive preparation to ease his patients into a better state of acceptance:The key to me is preparation that this is a treatment and beyond that there won’t be any more, plus, understanding the risk/benefit ratio from a patient's perspective…so it's about letting them down gently. (Dr Khan)

Sarah, a 71-year-old woman living with ovarian cancer, recalled her oncologist's attempts to prepare her for the likelihood that her chances of surviving her illness were limited:Well last November (the oncologist) had told me that there was only a three in ten chance that I would recover and from the way my body was, I had a feeling that, I wasn’t going to be one of the lucky ones, but, that's the way life goes. (Sarah 71 years)

Oncologists were unanimous in their view that, in order to temper the loss and grief reaction experienced by patients, transition into the community needed to be managed gradually and delicately, with easy open-door access to contact them for advice if necessary. The following comment was typical of oncologists' views with further quotes given in table 5:You know the advantage with the service (referring to Hospital2Home) is that we can, you know after we’ve had that discussion, we can immediately sort of, refer on and you can start taking over, but often we find that they often come back once more. They just need to make sure, that you’ve not forgotten about them, that it is safe, it is fine, and I find that often happens and we are happy for that…..they need that reinforcement one more time, that it is the right pathway. (Dr Ling)

Community care

Participants were asked about their experience of the Hospital2Home service and community services. In this context, the participants, both patient and oncologist, described the role of the Hospital2Home case conference as a reassurance to the patient that care is considered and coordinated, as well as describing positive and negative encounters with community services.

Visual integrated teamwork

Patient participants identified the imparting of knowledge to the patient as a central benefit of the Hospital2Home service. Patients used the word ‘enlightening’ to describe the meeting. Participants also noted that teams involved in their care were overarchingly supportive of one another (table 6). This interaction made a positive impression on patient participants. Sarah, a 71- year-old with ovarian cancer, noted:I met the people I was going to be concerned with mostly, together. I saw their interaction as well, and that it was a good interaction. (Sarah, 71 years)

Participants commented that they felt the Hospital2Home meeting showed them that the different services were working as a coordinated team, ‘Singing from the same hymn sheet’,

Diane said exactly this:Everybody would be singing from the same hymn sheet, that whatever had been agreed, they'd all agreed together. I think that was the basis of us all knowing what was agreed. I think it was very important, um, and everything has worked like clockwork. (Diane, 64 years)

Anxieties and concerns about generalist care

A number of participants shared concerns about the ideal that care could be exclusively delivered in the community. These worries centred on a belief that, at times, the community teams lacked adequate knowledge to manage a patient’s specific cancer. Tim illustrates these concerns:One cannot expect doctors, GPs, to be cancer experts, you know, with all due respect to my GP so an excellent GP I wouldn’t necessarily expect them without looking up my case, to know as much as I do about it. (Tim, 64 years)

Prior experience of community services led participants in both groups to share concerns regarding the provision of services. Mark's following statement is an example of this:I been promised for their help…but will never deliver, because they have not time…the community suffers from time. (Mark, 62 years)

These concerns were mirrored by half the oncologists, one example being Dr Jessop:One of the reasons oncologists follow patients up is because palliative care services aren't quite as good as people think they are because they’re not getting very good care in the community…. (Dr Jessop)

Discussion

Evidence continues to highlight that most people would prefer to die at home.1 ,2 ,22 This ambition requires that hospital specialists involved in the care of patients approaching the end of life are proactive in handing over some of the responsibility for their care to community teams. We aimed to better understand, for the first time, the cognitive meanings and processes involved in the transition from active treatment to community-based palliative care. A major strength of our study is that we were successful in recruiting and obtaining in-depth views of patients living with advanced cancer very close to death, and juxtaposing these with accounts from their oncologists.

We identified that many patient participants expressed several inter-related losses. First, they spoke of an overwhelming sense of loss surrounding the ending of their treatment. This was intractably tied to loss of hope and a future free of illness. Second, loss was also positioned alongside the secure, meaningful relationships they had built up with their oncologists, sometimes over many years. Interestingly, this concern was also recognised by the oncologists, and its psychological impact on the patient preoccupied them. Basconi23 observed high levels of family satisfaction when oncologists were part of the patient's care until death. They concluded that when a long and trusting relationship has been established, the connection between patient and oncologist should not be lost.24 These concerns are evident in other transition research in health. For example, transition of adolescents into adult services highlight similar issues: loss of close relationships, attachment and concerns about future trust with new service providers.25–26 Specifically, our findings find correspondence with qualitative research among adolescents that observed reservations about ending relationships with healthcare professionals that had developed over a considerable period of time.24 This highlights that the length of the relationship between patient and doctor is a factor to consider, and which unless managed deftly and sensitively may impede successful transition. The narratives presented in this study also strongly indicate that a gradual, stepwise transition to community services may be a preferred option that allows the patient and their family to adjust more effectively to their new domain of care.

Importantly, our participants survived for a median of 34 days after interview with one dying within 11 days. These patients, therefore, had a very limited window of time to grieve for the loss of hard-earned relationships, relinquish hope in a possible cure, and then make the successful transition into solely community-based care. Based on our findings, we believe that theoretical understanding of models of grief is not the monopoly of those who care for bereaved relatives. Bridges'27 transition model bears similarities with grief models in the literature. The common stages in grief models are transferable, to varying degrees, to any personal change, including the transition from hospital to community-led care. Healthcare professionals involved in the care of those receiving active treatment, and the palliative care specialist who support these patients, would be well advised to hold this comparison central in their thoughts and approach to transition. We therefore propose that one answer is the notion of health-promoting palliative care28 much earlier in the patient's illness, giving more time for meaningful connections to be made between acute and community providers. This would allow rapport with community services to be rehearsed and then established before the final handover of care is required.

Our findings identify a number of barriers that compromise successful transition. We noted that a common concern, among both patient participants and oncologists, was the perceived lack of community oncology knowledge. This meant patients and oncologists had serious trepidations about the community team's abilities to continue to offer a style of care that was expected. This concern mirrors findings from research into oncology community follow-up of cancer survivors, and points to a need for further education to demystify the work of community-based palliative care.29 Lack of service provision in the community represented another concern. This is amplified against a backdrop of demographic ageing30 where demands on already spartan community services are becoming more threatening. In England, for example, the number of community nurses has steadily declined over the last decade.17 This mismeasure of service provision must be addressed in order to improve perceptions that the terminally ill and their families can be cared for safely and effectively at home.

Study limitations

This study has a number of limitations. While the insights generated by the study may be broadly replicable in other healthcare systems across the world, some caution is required.

First, the study is based on a small number of interviews with participants within the UK NHS system. Second, this study was conducted with participants from one tertiary cancer centre. This has important implications about the manner in which a small study is able to generalise to other hospital settings. Third, all but one patient participant were white British in origin. There are increasing numbers of patients who are from black Asian and minority ethnic groups.31 It is, therefore, crucial to note that the findings from this study may not apply to patients whose backgrounds are different to the majority population and who may hold different culturally ascribed values and expectations of care, and at the end of life. This warrants future research. Last, informal carers were also not included in this study. Supporting people with advanced disease not only assumes responsibility for the patient and also for those who provide informal care, typically spouses, and partners, close relatives and in some instances friends. Evidence suggests that family members often occupy a unique position; not only do they provide practical and emotional care, but they also potentially need support in order to continue in their role. Future research must similarly engage with them too.

Conclusions and recommendations

Our findings identify that the transition from hospital-led to community-led care at the end of life represents a potentially difficult moment for the patient and oncologist. It should be recognised that, for many, the transition between acute and community care is a critical life event where patient responses can parallel grief reactions observed during bereavement. A gradual transfer of care may improve this if the patient's condition allows. Therefore, when a life-limiting prognosis is determined, introductions to the community team should be initiated at the very start of palliative/non-curative treatments. However, the ability of the patient or family to check in with their specialist to discuss any queries seems important, and a mechanism for this should be included in any discharge plan. The patient participants' experience of the Hospital2Home service was a positive one. However, earlier integration of services like Hospital2Home into oncology outpatients would improve education around the roles of the service, and may increase patient and oncologist confidence in discharge to community care. Finally, the complexity and therapeutic importance of a longstanding doctor–patient relationship should not be underestimated. This has implications for end-of-life service development in chronic diseases. These conditions are likely to have been managed under hospital follow-up for considerably longer than the patients with cancer in this study, and patient–doctor attachment may be an even more pressing issue.

References

Footnotes

  • Contributors CS, JR, JK, and NB designed the study. CS collected the data by conducting the one-to-one interviews. CS and JK performed the data analysis. CS, JR, JK and NB all contributed to the writing of the manuscript.

  • Funding The Royal Marsden Cancer Charity.

  • Competing interests None declared.

  • Ethics approval London Regional Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.