Theme 1: characteristics and trajectory of haematological malignancies

It was generally agreed that hospital deaths were principally determined by the characteristics and trajectories of haematological malignancies. These were considered complex and uncertain, with indistinct transitions between curative/life-prolonging and palliative approaches to care, leading to difficulties determining the appropriate time to initiate discussions about end-of-life care. This uncertainty was captured in descriptions of trajectories, which were said to range from gradual decline (often punctuated by episodes of acute deterioration) to sudden and unexpected death. The propensity for the latter was recognised as greater in patients with diseases requiring urgent, intensive treatment (eg, acute leukaemia or aggressive lymphoma) but was also said to occur on a background of gradual decline, typically in indolent diseases following remitting/relapsing pathways (eg, myeloma, chronic lymphocytic leukaemia and follicular lymphoma). Even within these categorisations, however, variations were found. Transitions were considered less dichotomous than in other cancers, where patients were described as being more likely to be discharged from individual specialisms at specific pathway points, typically after surgery or failed chemotherapy.

‘it could be severe neutropenic sepsis, rapid deterioration in a situation where you are trying to treat (the cancer), where somebody goes from well, to critically unwell, to dead, and you can’t plan for that, they suffer some sort of complication related to chemotherapy, so bleeding, internal haemorrhage, because they are profoundly thrombocytopenic…you can’t plan ahead for those (events)….’ (Haematologist 6)

‘some patients will deteriorate over days, some will last several months, even with acute leukaemia…’ (Haematologist 4)

‘I do think their disease trajectory makes it more difficult to, eh, actually predict when they’re going to sort of start deteriorating, compared to other cancers’ (GP 6)

Difficulties determining prognosis were discussed by many interviewees. This was complicated by pathways that might include sudden deaths or ‘dip up and down’ as multiple relapses and recoveries occurred. While the need for realistic, frank and early discussions of prognosis and the potential for sudden changes were considered crucial to advance planning, haematology staff described how these could sometimes only be initiated when patients had accepted that cure may not be possible. A further difficulty was identifying the point at which response to treatment (intensive/non-intensive chemotherapy or supportive care) was no longer likely to be achieved, particularly when patients may have recovered previously, even from seemingly dire situations.

‘the trouble is not knowing in advance what might be achieved and what might not…that’s quite tricky’ (Haematologist 9)

The frequent introduction of novel therapies for some diseases further complicated the issue of determining when to stop treatment. Treating patients aggressively in the last month and days of life was considered unavoidable, however, when this was being delivered with curative intent and sudden death occurred. In such situations, the transition to end-of-life care was described as absent, particularly among younger people, as emphasis was on saving life, often in intensive care settings. Treatment was also routinely given in the terminal phase as an intentional strategy for disease and symptom control, and to maintain quality of life for as long as possible. Non-haematology specialists considered this approach overly aggressive, however, believing that it occurred due to reluctance on the part of (some) haematologists to discuss withdrawing treatment and possible death, factors cited as impeding decision-making and advanced planning.

‘some consultants treat, treat, treat’ (Palliative nurse 5)

‘I think haematology want to keep patients going as long as possible and they don’t want to break that bad news’ (Palliative nurse 1)

Overtreating of certain groups of patients, such as those with acute myeloid leukaemia (AML), was acknowledged by some haematologists.

‘I personally think we treat far too many people far too aggressively, that the thrust of AML is completely wrong, if the patient is over 60 or 70 you are never going to cure them. Taking a more palliative, quality of life approach would probably be better’ (Haematologist 6)

Some respondents alluded to ‘co-dependency’ between haematologists and their patients, describing haematologists’ reluctance to ‘give up’ exploring treatment options. In this context, patients contributed to the impetus for ongoing treatment and hospitalisation, being desperate to ‘try anything’ in the hope of achieving cure or postponing death. Patients were said to associate this with (possibly false) hope for continuing life and discharge from haematology to home or hospice with imminent death.

‘it might be quite hard to… be impassive… you [haematologist] think, well, we’ve pulled them back from a similar situation before, maybe we can do it again…and that has some impact on your ability to let go…in the context of withdrawing treatment…up to that point, you might have always been the guy who had the next treatment ready, the next idea, if this doesn’t work, we’ll do this…and that has on occasion worked and helped improve quality of life or prognosis’ (Haematologist 4)

‘he was a fighting spirit…he wanted to go on being treated…he wanted treatment to the end’ (Haematology nurse 7)

‘she wanted anything, if it could prolong things, if it could give her more time, then she wanted to have it’ (Relative 9, concerning deceased wife)

‘we really wanted him to go to the hospice as he was dying, fading away and he would not have it…he chose to stay on the ward…he wanted to cling on to the blood tests…the reassurance he was still being watched’ (Haematologist 1)

Theme 2: mismatch between the expectations and reality of home death

Patients’ and relatives’ limited knowledge and sometimes unrealistic expectations about end-of-life processes, and the sudden onset of distressing symptoms, such as bleeding and sepsis, were said to potentially precipitate a shift in preference away from home towards hospital death.

‘the reality of somebody dying at home can be very, very difficult and very different to the ‘home sweet home’ image you might have’ (Haematology nurse 4)

‘he would have continued at home if he hadn’t started coughing up blood and couldn’t get his breath’ (Relative 5—spouse died in the hospital)

As a consequence, another reported cause of hospital death was the frequency with which patients ‘bounce back’ into hospital due to sudden deterioration and distressing symptoms. Emergency calls from relatives, GPs or out-of-hours doctors were cited as major reasons for readmissions, as ambulance staff (often lacking information about preferences) were said to routinely transport patients to Accident and Emergency (A&E), resulting in hospital admission.

‘the problem is, if they’re bleeding and the relatives panicking, they call 999, obviously they end up going to A&E…then they end up with the problem of inappropriate treatments… they’re [emergency services] not aware of the fact that somebody’s got leukaemia in the terminal phase…we [primary care clinicians] need to make sure that we communicate well with A&E and the ambulance service, the paramedics, so they know exactly what they’re dealing with’ (GP 8)

Theme 3: preference for hospital death

The close relationship between haematology staff, patients and their relatives was often discussed and was perceived to lead to preferences to remain in hospital at the time of death. This bond was considered a positive consequence of ongoing contact between the individuals involved over prolonged time periods. It was described as arising from experiences of ‘exemplary care’, in a setting often regarded as ‘a second home’, and associated with feelings of safety and security. Consequently, situations were described where remaining in the haematology ward, in a familiar environment with well-known staff, was said to be preferable to moving to a palliative care or hospice setting where new relationships would need to be built, often over short periods of time.

Some haematology staff shared similar sentiments, describing how transferring their patients to community staff they did not know for end-of-life care could feel like ‘abandoning’ them. These interviewees also described a certain satisfaction in being able to provide terminal care for patients they had known a long time, although this was sometimes countered by concerns about capacity (eg, staff time and availability of a private room).

‘you’ve been there for the relatives, for the carers and… you want to see all that through… the difficulty sometimes… is that by transferring somebody purely to palliative care, you almost feel as if you’re washing your hands of them’ (Haematology nurse 4)

‘I think that a lot of it… is building relationships again, and the way we work is that we, we see them at diagnosis and we do…all the chemotherapy treatments, so we get a really close bond and then they, they’re always coming back to clinic and we’re seeing them so if they relapsed, it would be us that they would see again ….so really in the end we’ve got kind of years of quite a strong bond with our patients and I think that’s the hard thing then is that when they do come towards the end I think they feel that they want to stay with us’ (Haematology nurse 7)

‘there’s only two people on nights for 20 patients, and if you’ve got someone who’s dying… it’s awful. During the day isn’t so bad… you have five nurses on, in the morning, and you go to two at night. So you know, it’s a big difference.’ (Haematology nurse 1)

Haematology doctors and nurses often questioned whether a good death could only occur at home, proposing instead that patients’ and their family’s needs for physical and emotional support could be effectively met through hospital haematology services, with input from palliative medicine as required, and that this may be entirely appropriate.

‘the current rhetoric that the only good death is a home death is absolute nonsense… it’s wherever the patient’s needs are best met… some patients get to know the nursing staff pretty well, and for them, it’s much nicer for them to go back to a ward where they know all the staff, than it is to go somewhere else or even to struggle in their home…so it may be their choice that they’re coming in to die, and I don’t think we should deny them that just because the Government has a bee in its bonnet about ‘people must die at home’… and I can see in haematology patients who have been coming in and out of a ward for years… a hospital death may be an appropriate death…and it may be done very well, actually’ (Haematologist 1)

Some differences were identified between haematology practitioner perceptions and those of other clinicians and some relatives, however, with the latter being most likely to cite home as the expected end-of-life preference.

Theme 4: barriers and facilitators to home or hospice death

A number of practical barriers to non-hospital death that were specific to patients with haematological malignancies were identified. Some generalists expressed unease about managing haematology patients at home, either because they thought they themselves lacked knowledge about what were perceived as complex diseases, or because they considered that distressing symptoms, such as bleeding, were a barrier to death at home—a view shared by some haematology staff. Others, however, reported the relative infrequency with which such symptoms occurred, and did not consider the end-of-life care needs of haematology patients to differ much from that of people with other conditions.

‘bleeding would be the big one for patients with HM…you would have to have robust family and carers to cope with that’ (Palliative doctor 5)

‘the last patient that I tried to manage at home, she had a big, uh, GI bleed at the end of the life, so she came in, because of that, cause her husband could not cope… with that’ (Haematology nurse 5)

‘we’ve got dedicated district nurses, that, I would have every confidence, they could look after that…haematological malignancy may, may be more dramatic, but you can get just as ill with other malignancies…pain, bleeding, breathlessness, agitation, confusion, all those things you get with any cancer…and you get with the haematological malignancy patients. Interviewer: So it’s not actually that different from looking after patients with other cancers. Um, no, not in terms of providing end of life care’ (GP 3)

Due to the potential for rapid deterioration and death within hours or days, home-discharge (when preferred) could be required at short notice. While some hospitals had systems in place to organise this (eg, integrated discharge teams), others did not. In the latter case, the haematology nurses found such discharges could be time-consuming and frustrating, particularly if systems could not be put in place before the patient became too ill to be moved. Similarly, hospice beds were not always available at short notice, and inconsistencies in policies concerning the delivery of transfusions (often said to be required to maintain quality of life) represented barriers to referral.

‘when you are trying to get someone home, it takes up an incredible amount of time…phone the hospice, phone the district nurses, get stuff in place, like a bed, sometimes you don’t have time to do it…and the patient is deteriorating in front of your eyes…sometimes, a lot of the time, you have to stop and say, you are too unwell to go home now. I think that’s one of the reasons people don’t die at home’ (Haematology nurse 1)

‘the blocking point for us is that often there is no bed in the hospice, or they can’t deal with transfusion needs’ (Haematology consultant 5)

Inadequate communication across the primary/secondary care interface was regarded as a significant challenge to home death by GPs and community palliative care nurses. Haematological malignancies were described as cancers that were generally managed solely by haematologists in the hospital setting, with patients being encouraged to contact the haematology unit (rather than their GP) as the ‘first port of call’ for advice about their disease. Although GPs received correspondence about hospital appointments and admissions, this process was said to cause them to lose contact with their patients, and know little of their likely prognosis.

‘we can feel out of the loop….you don’t know what’s going on’ (GP 4)

In such cases, GPs were sometimes not aware that fast-track hospital discharge may be required to facilitate home death, and they typically felt that they were left with little time to develop relationships with the patient or their relatives before the patient’s death.

‘it’s usually two faxes, one for us (GP) and one for the district nurses, to say this patient is coming home…we’ve done this, we’ve done that, there’s no more active treatment, they will need…and there’s a list of stuff, and that’s sometimes the first we know of it…’ (GP 1)

Other important barriers to home death were reported that are likely to be common across other cancers, including gaps in community nursing services (particularly overnight), patients living alone and/or without lay carer’s support and the ability of lay carers to manage at home, particularly in circumstances involving young children, or lay carers who were themselves frail or unwell.

Analysis of data from relatives’ interviews revealed that the patients who had died at home (table 1), in line with their wishes, held strong preferences about place of care and death, which were in accord with relatives’ preferences.  They also had a good level of support from family members (who were said to have actively intervened to promote their wishes and ensure these were achieved), had symptoms that could be managed at home, considered nursing services’ support to be adequate and/or had the financial means to ‘buy in’ private carers to plug gaps, and had a GP who was closely involved in their care. Again, many of these factors are likely to be common across patients with other cancers.

Theme 5: suggested changes to practice to support home or hospice death

Interviewees suggested a number of changes that they considered could facilitate home/hospice death. Early initiation of frank conversations about prognosis (where possible), alongside timely integration of haematology and palliative care specialists (including at diagnosis or while active treatment was still ongoing), was considered important by all interviewees. While some discussed difficulties identifying the appropriate time to involve palliative care clinicians, others considered mutual understanding of their roles as underpinning timely referrals. Cited methods of promoting joint working included co-location of facilities, shared clinics and integration of palliative care staff into haematology multidisciplinary team meetings. Interviewees described many such systems as already being in place, and most reported increasing collaboration over time.

‘we’re now in the same building…at the moment on the (palliative care) inpatient unit we’ve got two people with haematological malignancies here now and I’ve got one or two on the books…in the past my experience was that we got very few referred…now we’re all in one unit…we’re getting referrals through’ (Palliative doctor 5)

‘there is merit I think to look at scoping the need or benefits of having a joint clinic between palliative care and haematology to help identify those patients…who need palliative input’ (Palliative nurse 5)

‘over the time I’ve worked in this area, over 9 years, I think that it’s changing, haematologists are more readily involving palliative care at an earlier stage’ (Palliative nurse 3)

Another common suggestion was for consistent, clear and detailed documentation of end-of-life discussions, and electronic transfer of this across care interfaces. Primary care practitioners discussed the Gold Standards Framework21 (a system that many of the study hospital-based clinicians were unaware of) and how use of the surprise question (‘would you be surprised if this patient were to die in the next few months, weeks, days?’), may help to identify patients nearing end of life.22 It was largely agreed that such a system would facilitate prognostic estimations in secondary care, and if communicated to primary care, may enable fast-track discharge. It was considered limited, however, in the context of sudden death.

‘communication between the teams, secondary and primary care, and also of course from the haematology team as well, is essential…we need a clear indication—this is where we are and what we are or not doing, and this is what we might or might not be able to do with this patient—is a key, a key thing I think’ (Palliative doctor 4)

‘oncologists, when they’re writing to the GPs with clinic letters… there is now a drive for them to say, it would be appropriate for you to put this patient on your Gold Standards Framework register…um, that’s actually happening, I’ve seen it’ (Palliative doctor 5)

Other suggestions include early mobilisation of community-based services (district, Marie Curie and Macmillan nurses and ‘hospice at home’ services), and if preference is for home care and death, the setting up of mechanisms for anticipatory prescribing and arranging the installation of equipment (eg, hospital beds, syringe drivers).