Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England
BMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b2391 (Published 15 July 2009) Cite this as: BMJ 2009;339:b2391
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Munday et als (1) recent study explored how general practitioners and
community nurses discuss preferred place of death with patients.
Discussion with patients about their wishes for their future care in this
way can also be called advance care planning.
The Association for Palliative Medicine (APM), as an organisation of
over 1000 doctors working in hospices, hospitals and the community,
welcomes national and local initiatives that enable patients to fulfil
their wishes for care at the end of their life. We agree that discussing
patients’ future wishes in the way described in Munday et als article
(1) can be beneficial for both the patient and healthcare professionals.
Advance care planning is becoming an increasingly popular approach
within end of life strategy and policy documents. It enables patients to
express their preferences about their wishes for future care, should they
lose capacity. The APM supports more widespread use of advance care
planning and welcomes recent national guidance on advance care planning
and advance decisions to refuse treatment (2,3,4).
Advance care planning requires sensitive, timely and honest
discussion with the patient and those they choose, which may or may not be
supported by tools to facilitate and document this. Such discussion should
be made in the context of the person, their understanding of their
condition and wishes as well as local resources. It will need to increase
the person’s understanding of their condition, likely future events and
treatment and care options.
The APM is supportive of advance care planning but has concerns
regarding some aspects of its implementation, firstly that any advance
care planning must be done voluntarily by the patient. Secondly,
preferences about end of life care are likely to evolve over time, as
found in Munday et als paper (1). Allowance needs to be made for people’s
preferences to change, for instance regarding place of death, as their
illness progresses. Thirdly, evidence of efficacy in improving patient
outcomes associated with the use of advance care planning is lacking at
present and research into this area is a priority. Fourthly, advance care
planning should not be used to audit health services as audit tools are
unlikely to be sufficiently sensitive to identify changes of preference by
the patient in response to a rapidly changing situation. Finally, the
issues of equity and limits on local resources have to be addressed in
attempting to meet patient preferences.
Competing interests:
None declared
Competing interests: No competing interests
Munday et al (1) in their study on the discussions with terminally
ill patients about place of death highlighted the many issues that arise
in considering and discussing these issues. In particular there were
concerns expressed by the general practitioners and community nurses that
they found these discussions difficult and therefore some avoided the
subject unless it was initiated by the patient.
An audit of the discussions with patients about the preferred place
of death undertaken by Clinical Nurse Specialists who work in the
community at the Wisdom Hospice has shown that although these discussions
may be complex they can be very helpful in planning care. The Team are
closely involved in caring at home for people with advancing disease and
over 50% of the patients are able fulfil their wish to die at home. The
mean length of patient involvement of the specialist palliative care
services over this audit period was 109 days. The place of death was often
recorded at the first visit by the nurses and the audit showed that the
preference was recorded on 73% of the occasions. The results showed that
discussion at the first visit was a good prognosticator for place of
death. Of the 102 patients considered over the 3 month period 84 (83%)
died within 9 months and the place of death was then compared to the
preference expressed at the first contact.Of patients who expressed a
preference to die at home 33 dies at home, 9 in the hospice and 3 in
hospital. Of patients who wished to die at the hospice 2 died at home, 6
in the hospice and 2 in hospital. Of the patients who did not discuss the
issue of place of death 9 died at home, 8 in the hospice and 6 dies in
hospital. All 6 patients who expressed a preference to die in a nursing
home or community hospital achieved their wish.
Of those who expressed a preference to die at home 73% achieved their
preference and only 7% of died in hospital. For those patients with whom
it was not discussed – either because of the nurse’s reluctance or the
patient’s request- 26% died in hospital and only 39% died at home. For
those who expressed a preference 11% died in hospital, 58% died at home
and 72% died in their place of choice.
This audit shows that discussion is important and although patients
and families may change their preferences over time it would seem that a
clearly expressed choice early on in the pathway is likely to be achieved.
Patients who do not express a preference are more likely to die in
hospital – which is rarely the preferred place of death for most people –
and are less likely to die at home.
The study by Munday et al (1) also showed that community staff were
concerned about coping with patients who did not want to consider end of
life issues and “had hope” which the staff did not want to take away.
This audit suggests that if we are to help patients achieve their wishes
we need to stress the advantages of early discussion. It is important for
both patients and professionals to recognise that empowerment of patients,
to make informed decisions about where they wish to be cared for and to
die, will not be achieved if these discussions are avoided. Health
care professionals may need to stress the negative consequences of
avoiding discussion when introducing these issues. We surely aim to help
people make informed decisions – this may include introducing all aspects
, both positive and negative. This challenge needs to be taken on by us
all – patients and families, professionals and society in general- as
expressed in the End of Life Care Strategy which suggests that there needs
to be a more open approach to the discussion of death and dying (2).
References
1.Munday D, Petrova M, Dale J. Exploring preferences for place of
death with terminally ill patients: qualitative study of experiences of
general practitioners and community nurses in England. BMJ 2009; 339: 214-
218.
2.Department of Health. End of life Care Strategy.London. DoH. 2008.
Competing interests:
None declared
Competing interests: No competing interests
As a physician who frequently cares for patients dying of chronic
organ failure, I appreciate the results of this study. In twenty years
experience I have only very rarely heard a patient express a clear desire
for a place of death. Most people, it seems to me after talking with many
terminally ill patients with an uncertain survival, would rather not die
at all. Nor can any advance care plans no matter how carefully developed,
account for all contingencies that arise during the dying process.
'Have you ever thought about where you would like to die?' is a
useful way to assess preferences directly however.
Competing interests:
None declared
Competing interests: No competing interests
There is a popular conception that the choice of the place to death
corresponds solely to the patient (and in some cases to her/his family).
However, the predicted characteristics surrounding the death must be
taken
into account. If the physician knows that a severe respiratory infection
in a
patient with advanced COPD is very likely to conduct the patient to death,
and
no extra interventions and resuscitation have been agreed, perhaps home,
with
all beloved ones surrounding the asphyxiating patient is not the ideal
place.
Unless a proper sedation can be guaranteed, the sight of a person
desperately grasping for air while dying is not the one a good doctor
wants to
offer or see himself/herself. And adequate sedation is not always easy to
provide outside an institution.
Does it mean that we, as doctors, should sometimes take our dying
patients
to the hospital, and provide them and their relatives with an decent
quality of
death? I think that in some occasions that is not only appropriate, but it
is,
sometimes, the only adequate action to be taken.
Competing interests:
None declared
Competing interests: No competing interests
In your home or in a hotel?
Some times, when we speak about death, we forget that it is the last
act of life.
Terminal ill and older people, before to arrive to his or her death,
they have lived in a determinated way.
That way of life must also be a major concern of society.
Ask where a chronically ill prefer to die, is but one example of the
dehumanization that has been achieved in modern societies.
We can imagine a similar study by Munday et al. (1), but raised in
other words.
Where people choose to live? In his home or in a hotel?
A large number of respondents expressed a preference clear: the house
itself.
But it has to be a home where we can find all those elements that
make life approaches the ideal of happiness.
Live with some comfort, surrounded by personal items that go along
with time, maintaining and caring relationships with family and friends.
But if my house is not what makes life valuable and worthy, maybe I
prefer to live in a hotel.
Although the treatment is more impersonal, employees of the
establishment trying to be kind and careful with the guests.
The person who has chosen to live in the hotel room, she or he can
take some of those objects that have accompanied him for years.
This is not like the house itself, but at least they feel that the
hotel staff are something more concerned for them.
If a old people find on him or her home caregiver, smiles,
conversation, respect…love, in one word, she or he never will want to go
in a hospice or terminal ill care provider.
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1. Munday D, Petrova M, and Dale J. Exploring preferences for place
of death with terminally ill patients: qualitative study of experiences of
general practitioners and community nurses in England. BMJ 2009; 339:
b2391
Competing interests:
None declared
Competing interests: No competing interests