Doctors should not discuss resuscitation with terminally ill patients
BMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7415.614 (Published 11 September 2003) Cite this as: BMJ 2003;327:614All rapid responses
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End-of life decisions depend very much on ethical and legal
traditions, which may vary from one country to another. Although
renouncing resuscitation in terminally ill patients is a common practice
in Germany the level of involvement of patients in this decision varies.
Unilateral DNR-Orders by doctors have been criticised sharply in the past
(Rieger 1999).
However, in a recent decision of the German Federal Court Of Justice
on advance directives (Az.: XII ZB 2/03), the reasons given for the
judgment comprised the interesting statement that “There is no space for
the consent of a [patient´s] custodian into life-prolonging or life-
sustaining treatment, if such a treatment is not offered, either because
in the perception of the attending physicians it is not indicated in the
first place, has become futile or is impossible for other reasons.” To my
knowledge, this statement is the first legal document (in Germany) which
states a primacy of the medical indication over a patients decision in
this field. Unfortunately the court left us with little advice on what
constitutes an “indication for life-prolonging treatment” in terminally
ill patients.
To “discuss” the issue may, in my understanding, have also more than
one meaning. While in a competent younger patient “discuss” may well mean
a deep involvement in an open decision process on the patient side, there
are other instances, where “to discuss” should rather stand for a honest
notification about the limits of resuscitation embedded in a conversation,
in which patients are given the opportunity to discuss their concerns and
worries about death and are assured of appropriate care and support. In a
previous letter to the BMJ, Lesley Fallowfield (2001) has described this
process to the point. I especially cherish her wording “Any armchair
ethicist who suggests that these conversations [about resuscitations]
should take place with dying people should try doing it”
Fallowfield L (2001) An unmerciful end. Decisions not to resuscitate
must not be left to junior doctors. BMJ 323:1131
Rieger D (1999) The refusal of life-sustaining therapeutic measures in
moribund [german: Verzicht auf lebenserhaltende Therapiemassnahmen bei
moribunden Patienten.] Dtsch.Med.Wochenschr. 124:267-270.
Competing interests:
None declared
Competing interests: No competing interests
Manisty and Waxman concluded “When people are dying, it is entirely
unethical to discuss resuscitation with them.” Leaving aside the ethics,
we agree with Higginson’s response that discussion of wishes for end of
life care, including resuscitation, should take place well before the
dying patient is hospitalised. We are currently engaged in research
(supported by the Nuffield Foundation) on ways of increasing the frequency
and quality of discussions about end of life issues before people become
terminally ill or otherwise incapacitated. We have held focus groups and
interviews with with over a hundred men and women aged 65 years or older
who are currently in good health and living independently in the
community.
Our interviews and focus groups are still underway, but we have
already identified some important themes. This group would like to be
better informed about resuscitation and other potentially life-prolonging
treatments. Many want to have more frank and open discussion of end of
life issues but in a death-denying society such as ours there are many
barriers to overcome. Interestingly, many older people would prefer to
have these discussions with their family rather than their doctors.
Family members appreciate knowing how the older person feels about life
prolonging treatment in terminal illness. In the absence of such
knowledge, they feel compelled to make sure the older person is given all
possible treatments even if they are futile. However, if they have had
clear instructions earlier, they can support withholding of treatment with
a clear conscience knowing they are acting in accord with the patient’s
wishes.
These discussions are difficult, and one way to help families to
start talking is to give them hypothetical scenarios to discuss. We find
that these discussions often become personalised and people begin to talk
about what they would like for their own end of life care. If doctors find
end of life care conversations “unethical” then perhaps they can
encourage families to hold such discussions and to do so sooner rather
than later.
Sarah E. Hampson Professor of Psychogy and Health
Hilary Thomas, Professor Oncology
Sara Arber, Professor of Sociology
Tushna Vandrevala, research fellow
Tom Daly, research fellow
University of Surrey
Competing interests:
None declared
Competing interests: No competing interests
Your "Education and Debate" (1) articles on resuscitation policies
raise the issue of Cardiopulmonary Resuscitation (CPR) decision making for
patients who are terminally ill. One might expect that patients would
have had a discussion with doctors about their prognosis and treatment
options before referral to a Palliative care team.
We audited the CPR status of 53 consecutive in-patients, when
referred to the Palliative care service at Mayday University Hospital and
found a CPR had been made on only 37. Eleven were surgical patients; four
decisions had been made (Two by EC physician). Thirteen were EC patients;
all had had a decision. Twenty nine were medical patients; 19 had had a
decision.
Without a CPR decision in the event of cardiopulmonary arrest the
patient is ‘For CPR’ by default. Current guidelines (3) advise that where
patients admitted to hospital are at “foreseeable risk of cardiopulmonary
arrest” there should be exploration of their wishes regarding CPR.
Patients with terminal illness are likely to die and a decision should
therefore be made for all patients. Many patients would not wish to
receive CPR. Decisions, and discussion regarding resuscitation should be
made for all patients with terminal disease and ought to be made before
referral to Palliative care teams.
1 For and against: Doctors should not discuss resuscitation with
terminally ill patients.
Manisty C, Waxman J, Higginson IJ.
BMJ. 2003; 327: 614-616.
2 Doctors should not discuss resuscitation with terminally ill patients.
Irene J Higginson
BMJ. 2003; 327: 615-616
3 Decisions relation to cardiopulmonary resuscitation. A joint statement
from the British Medical Association, the Resuscitation Council (UK) and
the Royal College of Nursing. March 2001. BMA. London.
Competing interests:
None declared
Competing interests: No competing interests
I'd like to add to the case against discussing cardio-pulmonary
resuscitation, not only in the terminally ill but also in the frail
elderly with multiple medical problems. Cardiopulmonary resuscitation
(CPR) in these groups is not only futile, it is irrelevant. CPR works
(occasionally) in people who develop an arrhythmia - usually in the
context of known heart disease. As Manisty and Waxman point out, it never
works in the terminally ill. As these patients are not dying of an
arrhythmia, this is hardly surprising. No-one expects us to discuss other
completely pointless and irrelevant treatments with patients - one might
as sensibly discuss, say, haemodialysis in terminally ill patients with
good renal function - but we don't because they haven't got a disease that
will benefit from that treatment.
If one were to follow the current guidelines, one would have to say to the
patient that we wished to know whether or not they wanted CPR despite the
fact that there was evidence to suggest it had no chance at all of
succeeding. If I was a patient and my doctor offered me treatments that
worked in other conditions but never in mine, I'd not be filled with
confidence.
Higginson's stance is perhaps all the more surprising in that she
correctly points out that doctors not infrequently give an over optimistic
view of outcomes resulting in patient acceptance of treatment which in
retrospect they would rather not have had. Perhaps she would like to tell
us exactly what sort of information she feels should be given in this
setting that can result in the patient being anything other than
bewildered
Competing interests:
None declared
Competing interests: No competing interests
There has been a significant move to improve communication and
patient participation as partners in care which appears to be undermined
by the authors. The National Health Circular ¹ states that “patients’
rights are central to decision-making on resuscitation”. If we are to
uphold this directive then patients’ involvement must be part of the
process. There should be no blanket rule regarding resuscitation as it is
indeed an individual patient issue but there should always be an
opportunity to discuss any choices that may be appropriate and the onus is
therefore on the doctors to provide the right information for the patient
to understand whether any resuscitation attempt would be futile in their
case and to come to a consensus on it.
A major failing of this article is the absence of any definition for
either “dying” or “terminal” and as a result it is not clear when the
authors consider that the terminal phase of illness occurs. The National
Council for Hospice and Specialist Palliative Care Services definition of
terminal is “during the last year of life” ². It is entirely appropriate
to affect a 'do not resuscitate'(DNR) order when the actively dying
patient is in the last few days or weeks of life but in the case of sudden
cardiac arrest where this occurs independently of any other illness
process, then resuscitation is entirely appropriate. Should a person who
suffers sudden cardiac arrest in their last year of life be less worthy of
our professional skill just because they also have a terminal illness?
It is unfortunate that in the reference made by Manisty and Waxman to
Haidet et al³ there was no indication as to whether the number of DNR
orders were related to discussion between patients and their doctors or
had been made unilaterally by doctors. A desire for DNR is not the same as
a DNR order existing. Of the Support project papers alone, that
specifically sought patients’ resuscitation preference not one found less
than 53% preference for resuscitation in the patients’ current health
state, all of whom were seriously ill, hospitalised patients 4-12.
There seems to be a sense of “preciousness” around discussing
resuscitation with patients for fear of upsetting them yet the literature
clearly demonstrates that patients do not suffer from such discussion and
indeed for the most part welcome open, frank and honest dialogue. Patients
do want to confront their illness situation and indeed the ethos of
palliative care is to facilitate and support the patient and their family
through the grieving and acceptance of their fate.
Currently I am completing a systematic review of terminally ill
patients’ resuscitation preferences. I can agree that more research is
required and this is an area that I am already exploring but the key to
eliciting patient preferences is to ask the patient. Value judgements can
not and should not be made for someone else.
It can be argued that the person in sudden collapse with a
progressive, incurable disease will die anyway and therefore intervention
will merely prolong a potentially difficult short-term future. However
only the person with the disease can judge whether their quantity of life
should be shortened by lack of life extending interventions. It seems that
there is a perpetual assumption that quantity of life should always be out-weighed by quality of life but it is known that quality of life does not
correlate with a preference for resuscitation and patients do make
quantity of life decisions.
1. The Health Service Circular – Resuscitation Policy (HSC 2000/028)
2. Vital Judgements – Ethical decision-making at the end of life. The
National Council for Hospice and Specialist Palliative Care Services
(2002)
3. Haidet P. Hamel MB. Davis RB. Wenger N. Reding D. Kussin PS.
Connors AF Jr..Lynn J. Weeks JC. Phillips RS. Outcomes, preferences for
resuscitation, and physician-patient communication among patients with
metastatic colorectal cancer. SUPPORT Investigators. American Journal of
Medicine. 105(3):222-9,1998.
4. Golin CE. Wenger NS. Lui H. Dawson NV. Teno JM. Desbiens NA. Lynn
J. Oye RK. Phillips RS. A prospective study of patient-physician
communication about resuscitation. Journal of the American Geriatrics
Society. 48(5):S52-S60, 2000 May.
5. Hakim RB. Teno JM. Harrell FE Jr.. Knaus WA. Wenger N. Phillips
RS. Layde P. Califf R. Connors AF Jr.. Lynn J. Factors associated with do-
not-resuscitate orders: patients’ preferences, prognoses, and physicians’
judgements. Annals of Internal Medicine. 125(4):284-93, 1996 Aug 15.
6. Hofman JC. Wenger NS. Davis RB. Teno J. Connors AF Jr..Desbiens N.
Lynn J. Phillips RS. Patient preferences for communication with physicians
about end-of-life decisions. Annals of Internal Medicine. 127(1):1-12,
1997 Jul 1.
7. Lynn J. Ely EW. Zhong Z. McNiff KL. Dawson NV. Connors A.
Desbiens NA. Claessens M. McCarthy EP. Living and dying with chronic
obstructive pulmonary disease. Journal of the American Geriatrics Society.
48(5):S91-100, 2000 May.
8. Phillips RS. Wenger NS. Teno J. Oye RK. Youngner S. Califf R.
Layde P. Desbiens N. Connors AF Jr..Lynn J. Choices of seriously ill
patients about cardiopulmonary resuscitation: correlates and outcomes.
American Journal of Medicine 100(2):128-37. 1996 Feb.
9. Puopolo AL. Kennard MJ. Mallatratt L. Folen MA. Desbiens NA.
Conners AF Jr.. Califf R. Walzer J. Soukup J. Davis RB. Phillips RS.
Preferences for cardiopulmonary resuscitation. Image – the Journal of
Nursing Scholarship.29(3):229-35,1997.
10. Rosenfeld KE. Wenger NS. Phillips RS. Connors AF. Dawson NV.
Layde P. Califf RM. Lui H. Lynn J. Oye RK. Factors associated with change
in resuscitation preference of seriously ill patents. Archives of Internal
Medicine. 156(14):1558-1564.1996.
11. Roth K. Lynn J. Zhong Z. Borum MD. Dawson NV. Dying with end
stage liver disease with cirrhosis: Insights from SUPPORT. Journal of the
American Geriatrics Society. 48(5):S122-S130, 2000 May.
12. Wenger NS. Phillips RS. Teno JM. Oye RK. Dawson NV. Lui H. Califf
R. Layde P. Hakim R. Lynn J. Physician understanding of patient
resuscitation preferences: Insights and clinical implications. Journal of
the American Geriatrics Society. 48(5):S44-S51, 2000 May.
Competing interests:
None declared
Competing interests: No competing interests
Manisty and Waxman debated against Higginson as to whether doctors
should or should not discuss resuscitation with terminally ill
patients.1,2 In fact, the UK guidelines do not require doctors to discuss
resuscitation with incompetent patients who are terminally ill, although
involving relatives to secure an understanding may be regarded as a matter
of good practice.3 It follows that many terminally ill patients who are
previously competent can deteriorate rapidly and become incompetent to
discuss resuscitation with their doctors.
The National Council for Hospice and Specialist Palliative Care
Services and the Association for Palliative Medicine of Great Britain and
Ireland suggest that there is no ethical obligation to discuss
resuscitation with terminally ill patients, for whom such treatment,
following assessment, is judged to be futile.4 But they add that if the
likely outcome of resuscitation is uncertain, anticipatory decisions
regarding resuscitation should be sensitively explored (by discussion)
with appropriate patients.4 In practice, we think most clinicians are
certain about the unfavourable outcome of attempting resuscitation on
terminally ill patients.
Because the terms ‘futility’, ‘quality of life’, and ‘best interests’
can sound paternalistic and dismissive at least to some patients, and may
not be clearly defined even to many healthcare professionals, the British
Medical Association has suggested that what is important is whether a
treatment such as resuscitation can provide an overall benefit to the
patient.5 The more familiar ‘benefit and burden’ model is therefore
recommended in an ethical decision-making process.5 Arguably, a rigid or
blanket discussion on resuscitation with terminally ill patients may pose
an unnecessary burden especially for those who are physically or mentally
not prepared to participate in discussion and making decisions.
If the terminally ill patients raised the issue of resuscitation, it
is obvious that doctors should discuss it with them. Clinicians caring for
terminally ill patients should be prepared for a controversial situation
whereby the patient concerned (who may be supported by the relatives)
wants resuscitation, yet the doctor (or even the whole care team) states
that resuscitation is ‘futile’.5 Fortunately rare, this situation can
occur even after a discussion aimed at securing an understanding and
acceptance of the clinical judgement that resuscitation will not
effectively restart the heart and breathing or that it cannot provide any
overall benefit.5 The guidelines states that although doctors cannot be
required to give treatment contrary to their clinical judgement, they
should, whenever possible, respect patients’ wishes to receive treatment
which carries only a small chance of success or benefit.3 The guidelines
further states that if a competent patient does not want a ‘do not attempt
resuscitation’ order, then one cannot be written.3 Effectively, medical
staff may be forced to perform inappropriate resuscitation.3 However, in
special circumstances, for example, where a terminally ill patient wants
to live long enough to see an estranged family member - information which
will only emerge from discussion with the patient or close relatives – a
treatment such as resuscitation which carries only a very small chance of
success or benefit may arguably represent a significant social or
psychological benefit to the patient to justify the burdens of a
resuscitation even if ‘judged to be futile’.5
Joseph K T Ngeh, specialist registrar in general and geriatric
medicine
Department of Clinical Geratology, Radcliffe Infirmary, Oxford OX2 6HE
JNgeh@aol.com
Vivien K L Toh, specialist registrar in general medicine,
endocrinology and diabetes
Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill
Hospital, Oxford OX3 7LJ
1. Manisty C, Waxman J. For and against: Doctors should not discuss
resuscitation with terminally ill patients: FOR. BMJ 2003;327:614-615.
2. Higginson IJ. For and against: Doctors should not discuss
resuscitation with terminally ill patients: AGAINST. BMJ 2003;327:615-
616.
3. Stewart K, Spice C, Rai GS. Where now with do not attempt
resuscitation decisions? Age Ageing 2003;32:143-148.
4. National Council for Hospice and Specialist Palliative Care
Services and the Association for Palliative Medicine. Ethical decision
making in palliative care: cardiopulmonary resuscitation for people who
are terminally ill. J R Coll Physicians Edinb 2002;32:280.
5. Ngeh JKT, Toh VKL. Cardiopulmonary resuscitation for people who
are terminally ill. J R Coll Physicians Edinb 2003;33:144-145.
Competing interests:
None declared
Competing interests: No competing interests
It is difficult and potentially distressing, both for the patient and
often for the doctor, to discuss resuscitation choices at the time of a
critical illness. Of course, the illness itself may preclude or distort
such a discussion.
Perhaps we need to take a step back and from the acute illness or the
terminal phase. Just as every responsible adult should have a will, surely
every responsible adult should be encouraged to have a 'living-
will'/advance-directive/call-it-what-you-will. Apart from expressing
treatment preferences and nominating proxies, this could also cover
questions such as "If your doctor were to discover that you have a
terminal illness, would you want to know?" Each hospital clerking (or GP
clerking, for that matter) should be an opportunity to check whether an
individual has such a 'living will', and whether he/she needs to update it
in the light of changing preferences. The question should be as routine as
checking for allergies.
Alternatively, as a softer substitute, patients on admission to
hospital (if competent) might be given a 'routine questionnaire' in which
they could express their basic preferences on such matters. The 'routine'
element would both be less alarming than a personal approach to the select
few; and might serve as a 'screening test' to pick up those patients who
are particularly anxious about or averse to discussing such issues.
Either of these 'mass marketing' approaches would serve the vital
function of raising public awareness about the process of dying and their
need to express their choices. Widespread adoption of these measures could
save much doctor-patient anxiety, numerous ethical dilemmas, and plenty of
NHS resources spent on unnecessary or unwanted treatment.
Competing interests:
None declared
Competing interests: No competing interests
Editor - I read with interest the debate on discussing resuscitation
with terminally ill patients. I feel that some of the arguments against
discussing resuscitation were over simplified by Dr Manisty and Professor
Waxman(1)as every patient should be treated individually. Even in
terminally ill patients the outcome is not always clearcut.
This is reinforced by the National Council for Hospice and
Specialist Palliative care Services and the Association for Palliative
Medicine who brought out guidelines for developing CPR policies for people
who are terminally ill (2). The guidelines state there is no ethical
obligation to discuss resuscitation when it is deemed medically futile but
that if the outcome is uncertain ‘anticipatory decisions, either to
implement or withhold CPR should be sensitively explored with appropriate
individual patients’.Therefore in certain situations a discussion is
appropriate.
As Irene J Higginson concludes (3) more research in this area would
be useful and I am currently collecting data looking at oncology patients
views on resuscitation and how they compare with the oncologist
responsible for their care. I hope the results of this study add useful
information to this interesting and important subject.
1. Manisty C, Waxman J (2003) ‘Doctors should not discuss
resuscitation with terminally ill patients: FOR’ BMJ, 327, pp614-5
2. Association for palliative medicine and the National Council for
hospice and specialist palliative care services (2002) ‘Cardiopulmonary
resuscitation (CPR) for people who are terminally ill’, APM news, no. 5,
p.1.
3. Higginson I J (2003) ‘Doctors should not discuss resuscitation
with terminally ill patients: AGAINST’ BMJ, 327, pp615-6
Competing interests:
None declared
Competing interests: No competing interests
At a recent, national communication skills course for senior clinical
oncologists it became apparent that there was strong and generalised
opposition to the guidelines on the need to discuss Do Not Resucitate
orders with terminally ill cancer patients. Was this through a lack of
appropriate training in communication skills as proposed by Higginson or
is there an alternative explanation?
The basis of Higginson's argument is the right of the patient to be
involved in decision making, however difficult that discussion may be.
This assumes, however, that there is a decision to be made. The data
quoted by Manisty and Waxman suggests that this is not the case. The
probabilites of success in these studies were not low but zero. In the
face of death from terminal cancer there is no autonomy. Death is an
inevitability not a choice. The only choice is whether a patient's corpse
should be treated with dignity or electrocuted, stabbed and jumped on. The
outcome will be the same. It is not surprising that many clinical
oncologists decline to offer that choice.
Ethical decisions are arrived at by balancing the sometimes competing
interests of a desire to do good, not to do harm and a respect for
patient's autonomy. The emphasis on beneficence by previous generations
leads some to disparage them as patronising. The present emphasis on
autonomy may result in the charge of a lack of compassion (1).
1. Holdway S. An uneasy trust. BMA News 9th Febuary 2002
.
Competing interests:
None declared
Competing interests: No competing interests
Views of patients and oncology health professionals concerning discussion of do-not-resuscitate orders
2 December 2003
Dear Sir/ Madam,
We read with interest the debate and correspondence in your journal
regarding the ethics of discussing resuscitation orders in the terminally
ill. We would like to report the results of a small qualitative study of 9
oncology inpatients and 9 oncology health professionals. Both groups were
approached to give their opinions on a pamphlet which was designed to
provide information pertaining to end of life issues, including
resuscitation. The 1000 word pamphlet included information about
optimizing communication with the health care team, treatment options,
palliative and psychological care and procedures and outcomes of
resuscitation. The participants were asked semi-structured questions
regarding inappropriate omission or commission of information and asked to
indicate the most appropriate time this information should be provided.
All patients (9/9) and nearly all oncology professionals (8/9)
thought that information about resuscitation should remain in the
pamphlet. There was a marked discrepancy between the opinions of oncology
professionals and patients about the optimal time in the illness to
present the pamphlet. Opinion among oncology professionals was divided;
55% (5/9) were unsure about the best time to present the information in
the pamphlet and opinion was evenly divided (late versus early) among the
rest. In contrast, 88% (8/9) of the patients felt the information should
be given at an earlier stage of disease such as at the initial
presentation of metastatic disease.
The qualitative feedback emphasized the difficulty of balancing
patient autonomy and medical beneficence. Additionally, proponents (both
patients and health professionals) pointed out that if the DNR discussion
was presented earlier it could be seen as part of routine oncology care
rather than a crisis measure.
The results of this interesting pilot study will provide a basis for
future research exploring patient preferences in terminal care.
Yours sincerely,
Rhea Stein,
Intern Clinical Psychologist
Dr Louise Sharpe,
Senior Lecturer
Clinical Psychologist
Department of Psychology
University of Sydney
Dr Anthony Joshua,
Senior Registrar in Medical Oncology
A/Professor Stephen Clarke,
Consultant Oncologist
Department of Medical Oncology
Sydney Cancer Centre
Royal Prince Alfred Hospital
Sydney, Australia
1. For and against: Doctors should not discuss resuscitation with
terminally ill patients. Manisty C, Waxman J, Higginson IJ. BMJ. 2003;
327: 614-616.
Competing interests:
None declared
Competing interests: No competing interests