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Deciding where to die - reality or pipedream?

In 2003 the Government published a White Paper Building on the Best� (2003) which contained a number of targets, promises and goals. It was primarily concerned with the provision of palliative care. One of its more prominent paragraphs refered to the ability of the patient to chose the place of their death, whether it was at home, in a hospice or a hospital.

This project will attempt to look at whether the Government has been actually able to deliver, or even make any progress in this respect, and to see if, in real terms, a patient does actually have much choice in the matter

Background

After the Building on the Best paper, there were a number of other milestones that were passed. The Secretary of State for health announced that there was going to be a provision of a large amount of new money (£12 million) for improving the standard of palliative care and its facilities generally and this was formalised in a Department of Health publication (DOH 2004)

Both of these pronouncements were, arguably, triggered by a series of other publications. The Cancer Plan (2000) was perhaps a seminal document, which outlined the NHS plans for both investment and reform in the palliative care services and was the result of a great deal of deliberation and analysis of the current services by many cancer specialists from many disciplines across the country. One of the major triggers for this particular document was the fact that, as they highlighted themselves, the voluntary sector was actually providing £170 million for terminal care and that this was an indication that the NHS should be doing more.

As a result of this initiative there was another publication called Choice, Responsiveness and Equity� (2002). This Paper is also seminal to this proposal as its prime thrust was to improve patient and user experience, to build new partnerships between those who work in the Health Service and those who use it.�

The significant phrase here is the improve patient and user experience�. We could reasonably expect that any healthcare professional would wish for these aims. This project is to explore just how successful the Government has been in achieving them in one specific measurable area.

Aims, Objectives and Intended Outcomes

The aims of this project are to ascertain, via both a literature search and direct enquiry, the number of people with terminal illness who profess a desire to die at home, and the number who actually die in the place that they have chosen.

We shall try to see if the literature allows us to draw any conclusions as to whether there are trends in this area and whether the recent Government pronouncements and edicts have made any significant impact on these trends.

We shall also try to examine (via a literature search) the factors that help to determine just what influences a patient's choice about the place of death and also which factors actually determine the reality of the place of death.

We appreciate that there are a great many factors that determine just where a patient either chooses to die or indeed, actually does die. We must attempt to identify these factors and attempt to account for them in our research.

Literature review

There have been a number of similar studies in this area and, by examination of these, we hope to derive useful information, both on the structure of the study, and also on which we may be able to base comparisons.

One of the major stumbling blocks which has been identified in past studies and certainly one that we must be aware of, is the fact that it is a common finding that the patient will often not openly accept that they have a terminal prognosis. This can either be because of frank denial or it may be that choose to remain optimistic. (Dobrantz 2005).

Frequently, however, the healthcare professional may enter into a collusion with the patient so that the actual truth is not faced immediately. This phenomenon was identified and extensively investigated by The (et al. 2000). The immediate significance of this is that, to be able to make a meaningful decision about certain factors that surround the end of life care, the patient must understand the situation fully together with all of its implications.

When a patient is given a poor prognosis they will almost always embark on a fairly predictable course of emotional turmoil which is described in detail by Jennings (et al 1997). It encompasses depression, denial, false optimism and then occasionally, acceptance. In our study, we must recognise these phases and be empathetic to them.

A number of other studies also examine similar themes. Meredith (et al 1996) considered the frequency with which patients, who had just been given a diagnosis of cancer actually want to know the likelihood of being cured. This was amplified in a study by Costain (et al 1999) who explored a little further an investigated the fact that when patients enquire about their condition they simply do not want to hear that the prognosis is poor and will even ignore it when told by healthcare professional (Leydon et al 2000)

This denial or false optimism has a clear bearing on the choices that a patient makes regarding their end of life care. Weeks and his colleagues (et al 1998) considered this issue in some detail and Girgis (et al 1995) looked at just how it influenced the choices of treatment that were offered.

Other authors have examined this area and can guide us further. Dean (2002) produced an excellent paper on talking to patients who have terminal diseases and gives us an insight into the coping mechanisms that patients utilise when they have a terminal illness. He makes the point that patients will often collude with their doctors about the chances of actually being able to achieve a cure� but they are equally able to talk to other healthcare professionals in an altogether more unguarded and open way. (Lynn 2001) This may well be of great relevance to the way in which we eventually construct the interview part of the study. (Curtis 2000).

We should also be aware of the point made by O'Rourke (2001) in his excellent article on the issue, that the choices of place of death can be completely unrealistic if the patient is not completely realistic about their actual prognosis

In terms of the actual place of death, Billings and his co-workers ( et al 2002) looked at the number of patients who elected( or were refered to) Hospice care. The authors found that less than 10% of terminally ill patients fell into this category. It follows that the vast majority of patients do not get the benefit of the holistic type of approach that hospice care tends to offer.

The Townsend study (et al 1990) could perhaps be considered seminal to our proposed study, as it examined, in great detail just how the quality of care that the patient received reflected on the patient's own choice for a place of death. We note that in this study, the authors found that 84% of their cohort, were able and willing to state an opinion as to just where they wanted to die. The actual breakdown is informative:

58% At Home
20% In Hospital
20% Hospice
2% elsewhere

The rest of this paper is worth considering further in the light of our proposed study. The authors found that of those patients who did actually die at home, 94% of them stated it as their first choice. If we consider the findings of those patients who died in hospital, then 69% had said that they wished to die somewhere else.

The paper concludes with the comment that the main determinant of the eventual place of death was the perceived lack of facilities for patient care. They observe that a small increase in costs could actually see the wishes of 50% of the patients to die at home being fulfilled.

This study is now 15 years old. If we are successful in reaching a satisfactory conclusion with our study, these figures will make an interesting comparison in the light of the Government targets.

We must be aware that some of the issues that may colour a patient's judgement on the preferred place of death may be their own perceptions on the difficulties of funding and provision of facilities in the NHS. (Field et al 1997). In the Field study, only 15% of his cohort actually managed to die at home despite over 90% expressing a wish to do so.

With the current vogue for patient empowerment and education, Bradshaw (1996) observed that there is actually a greater trend for patients to choose hospice care as an alternative to home as the preferred place of death. In their study (1992) James and Field comment that The characteristic of the hospice model is that it is delivered in a setting that is more reminiscent of the home than the hospital.� The relevance to our study is that patients who are enabled to receive hospice care in their end of life care are more likely to not only wish to die at home, but also to be enabled to die at home. (Tang ST. 2003).

1.An analysis of the feasibility of the evaluation; a consideration of stakeholders, context and ethics.

In designing any such project one has to be constantly vigilant to ensure sensitivity towards the needs and perceptions of the patients and their carers in what can be a very stressful and sensitive time for all concerned. Clearly, such considerations must supersede any other priorities that pertain solely to the imperative of data-collection.

We accept that enquiry into such matters as patient priorities and place of death may not always be easily (or appropriately ) discussed. We aim to be fully empathetic to the specific requirements of each individual approached and undertake not to make enquiries that may be perceived to be distressing to a patient or their carer.

Within these caveats, we believe that this type of study is feasible. This statement is based partly on our own evaluation and also on the fact that there are already several published studies on the subject.

It is clearly essential for a project of this nature to obtain prior Ethics Committee approval. This will be sought at an early stage in the planning of this project.

2.A full research design with sampling and selection, methods and rationale for them

Design, Sampling & Selection

Because of limitation on both time and funds, it has to be acknowledged at the outset that this project will be limited in its scope however, we believe that we have designed it to be large enough to provide meaningful results.

We aim to recruit patients from the Oncology unit at our local District General Hospital. Other studies have found that they have been able to achieve about a 50% compliance rate from patients that they have approached and so, in order to get a meaningful cohort of about 100 patients, we anticipate having to approach about 200. (Dean 2002)

We would anticipate selecting the patients by either trawling the case files of the Oncology Dept. or by approaching staff in the Dept. who could identify suitable patients for the study. (Weeks et al 1998)

In order to be able to run and complete the study in a reasonable time-frame, the entry requirement of the study would have to be that the patient has a realistic prognosis of less than six months.

As this cannot be a control-based trial there is no necessity to recruit control patients for comparison.

Because of a preliminary study of the numbers of patients that the local Oncology Dept. handles, we would anticipate being able to recruit 100 suitable patients in a four month period. These would then have to be followed up over at least a six month (probably nine month) period.

The methodology would be to brief Oncology Unit staff on the proposed project by direct meeting and fliers in the Dept. We believe that face-to-face meetings are far more likely to be productive than a simple circular.

We would have a dedicated contact point - either for a paper-based notification system, or a dedicated phone line for the staff to tell the research team when suitable patients had been identified and when they would be coming to the clinic.

We would ask the Oncology staff member to give the patient a flier which detailed the nature of our investigation, the reasons for doing it and the option of opting out of follow up. (Appendix A)

When the patient next attended the Dept. we would make contact after the consultation, and we would again explain the purpose of our enquiry and ascertain (sensitively) from the carer or , if appropriate, the patient themselves, if they were aware of the diagnosis, the implications for them and their choices with regard to their preferred options over the next six months.. We would leave them with a flier (Appendix B) and the carer with a note (Appendix C)

We recognise that a decision on the exact data to be collected will have to be made prior to the beginning of the project and this may well require either advice from Oncology staff or possibly a trial run on some patients who will then be excluded from the study (as we would not want them contaminating the eventual cohort)

During the interview, we would also note any contact details such as address and phone number of both the patient and the carer so that we can follow up the patient over the next six month period.

We would construct a suitable database for recording this information securely and in such a way as to comply with the requirements of the Data Protection Act. It is anticipated that this would be a computer-based system but we have not yet discounted the possibility of a paper-based system. To a large extent this decision will be determined by the level of funding that we can secure.

At the end of the study period we would ascertain the patients' status by a telephone call to their General Practice or carer, to see where the patient actually ended up dying. We have made provision for the carer to notify us in the event of a patient's death, but we feel that this is a necessary requirement in order to minimise the potential loss of data.

3.A timescale for the evaluation.

Timescale

The proposed time frame is as follows:

Time 0-1 months:
Commence preparatory work on full proposal.
Contact clinical directors of Oncology Unit to discuss feasibility of study and whether they would be prepared to assist.
To identify and approach staff in the Unit who might be able to identify and assist in patient approaches.
Establish funding sources (if appropriate)
Take advice from other research workers who have been in this situation and who may be in a position to offer practical tips and advice.

Time 1 month:
Complete proposal and seek approval from local Ethical Committee
Identify team to work on project and explain the project to them.
Finalise funding sources

Time 3 months:
Begin recruiting and interviewing patients and their carers

Time 7 months:
Aim to have completed entry cohort by this time

Time 11-14 months:
Collect data and follow up patients who have died in this period.
Establish the time and place of death.

Time 14-16 months:
Analyse and collate data, write up findings and submit to a reputable peer-reviewed journal for prospective publication.

Appendix A

(The preliminary explanatory flier)

From the Oncology Research team

We are currently conducting a survey amongst people who have a malignant illness. We are exploring the actual choices that they feel that they have, and the choices that they make that influence their care.

We would like your help in this project as it may help us to help others in your situation.

We would like you to agree to answer some questions about your case. It will take no more than 20 minutes and can be arranged to coincide with your next attendance at the clinic.

A member of the team will make arrangements to contact you at the time of your next clinic appointment.

If you choose not to help, please tell the doctor in charge of your case and you will not be troubled further.

Choosing not to help will not in any way affect the management of your case or your treatment.

Thank you for your time

The research team.

Appendix B

(Given to the patient after the primary interview)

Thank you for agreeing to take part in our research. You have now answered a number of questions relating to your choices about treatment and care.

If, for any reason, you change your mind or your circumstances change and these choices are no longer appropriate for you, please contact ######### on telephone number ######### to inform us of your choices.

Your help is very much appreciated.

The Research Team

Appendix C

(Given to the carer after the first interview)

Thank you for agreeing to help with our research.

In the event of the death of #########, please contact ########## on ######### so that we may amend our records.

Your help is very much appreciated.

The Research Team

References

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A one-day, hospital-wide survey of dying inpatients. J
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Bradshaw A. 1996
The spiritual dimension of hospice: the secularisation of an ideal.
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Cancer Plan, The. 2000
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Costain Schou K, Hewison J. 1999
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Curtis JR. 2000
Communicating with patients and their families about advance care planning and end-of-life care.
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Dobratz, Marjorie C. DNSc, RN 2005
Gently Into the Light: A Call for the Critical Analysis of End-of-Life Outcomes. Advances in Nursing Science. Nursing Care Outcomes. 28(2):116-126, April/June 2005

DOH 2004
Announcement from the Office of the Secretary of State for Health
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