Illness trajectories and palliative careBMJ 2005; 330 doi: https://doi.org/10.1136/bmj.330.7498.1007 (Published 28 April 2005) Cite this as: BMJ 2005;330:1007
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Murray et al (1) showed three typical illness trajectories for
patients with progressive chronic illnesses. Specialist Palliative Care
services have a well recognised role in the cancer trajectory, but their
role in the care of patients with non malignant conditions, is much less
established. National guidance, such as the National Service Frameworks
for older people (2001) and coronary heart disease(2000) have highlighted
needs, but there is still a learning curve. Our hospital palliative care
team, based in a District General Hospital, was established 7 years ago.
Five years ago, referrals for patients with a non cancer diagnosis
accounted for 8% of our inpatient referrals. That figure for the year
April 03-04 was 20%. However these referrals are occurring at a later
stage in the illness trajectory, than those of our cancer referrals: Out
of 472 in-patient referrals in that year, 49% of cancer patients died
under our care in hospital, compared with 75% of patients with non cancer
diagnoses. Times from referral to the team until death, are shown below:
TIME FROM REFERRAL TO DEATH for Cancer diagnoses:
<2 days: 55 (30.2%), 3-7 days: 50 (27.5%), 8-14 days: 38 (20.9%),
2-4 weeks: 25 (13.7%), > 4 weeks: 14 (7.7%).
TIME FROM REFERRAL TO DEATH for Non Cancer diagnoses:
<2 days: 39 (58.2%), 3-7days: 14 (20.9%), 8-14 days: 7 (10.4%), 2
-4 weeks: 4 (6.0%), > 4 weeks: 3 (4.5%).
79% of patients with a non cancer diagnosis died within 1 week
compared to 51% of patients with a cancer diagnosis. 58% of the non cancer
patients dying within 48 hours of referral.
We find receiving such late referrals a very frustrating way to work.
It does not allow time to develop relationships, in order to provide
support. It does not allow time to talk with patients about their wishes
for future care and where that might be. It may also deprive the patient
of needed symptom management earlier on in their illness.
The need for palliative care input for non malignant conditions has
been well demonstrated in terms of symptom burden and communication about
dying and future planning (2,3). Julia Addington-Hall (2) showed that
patients with a non cancer diagnoses were less likely to know they were
dying and more likely to put up with symptoms as being just the way it is,
than the cancer patients. Our results could reflect a number of
circumstances: the known difficulties in predicting prognosis, especially
for patients with non malignant conditions such as heart failure. (4,5)
There may be a lack of recognition of the palliative care needs of this
patient group. They may also imply an anxiety about involving Specialist
Palliative Care too early and therefore frightening the patient and carer.
It may be that this is a local phenomenon, within our hospital.
The trend towards late referrals used to be more pronounced for
cancer patients, but this has improved as the profile of Specialist
Palliative Care has risen. It may be that we are involved in a different
set of clinicians looking after patients with non malignant diagnoses.
Whilst pleased that our referral patterns show an increase in non
malignant diagnoses, we want to get away from being terminal care teams.
Murray et al (6) gave the very valuable advice: that we ask ourselves how
surprised would we be, if this patient died in the next 12 months? Being
alert to disease trajectories can help us plan with patients to provide a
better quality life and, perhaps, death.
1. Murray, S. Kendall, M. Boyd, K. Sheikh, A. "Illness trajectories
and palliative care." BMJ, p. 1007-1008, Vol 330, 30 April, 2005.
2: Addington-Hall, J.; Fakhoury, W.; McCarthy,M. "Specialist Palliative
Care in Non Malignant Disease". Palliative Medicine, 1998; 12: 417-427.
3. Murtagh, F.; Preston, M. Higginson, I.. "Patterns of dying: palliative
care for non malignant disease". Clinical Medicine, p. 39-44, Vol 4, No.
1, Jan/feb. 2004
4. Friedmann, PD, Brett, AS, Mayo-Smith, MF. "Differences in generalists
and Cardiologists perceptions of cardiovascular risk and the outcomes of
preventative therapy in cardiovascular disease. Ann. Int. Med. 1996;
5. The SUPPORT Principal Investigators. "A controlled trial to improve
care for seriously ill hospitalised patients. The study to understand
prognosis and preferences for outcomes and risks of treatments.
(SUPPORT)". JAMA 1995; 274: 1591-8.
6. Murray, S.; Boyd, K.; Sheikh, A. "Palliative care in chronic illness".
BMJ, p. 611-612, Vol 330, 19 March 2005
Competing interests: No competing interests
'She just got sick over the weekend and died on the spot and she did
not suffer at all like other people who got sick and put on drips', from
an ongoing study of people dying of AIDS in SOWETO South Africa, this is
how a lay carer described the death of her patient.
We read with interest the article by Murray et al(1)and wish to
discuss the challenging disease trajectory for HIV/AIDS.
AIDS is the leading cause of death in South Africa(2). It has been
suggested that AIDS has a similar trajectory to that of cancer in the pre-
antiretroviral therapy (ARV) era and congestive heart failure in the ARV
era(3. We propose an alternative trajectory model.
Ascertaining prognosis and understanding the impact of social stigma
on the person and family affected by AIDS is complex. AIDS can cause
explosive episodes of illness interspersed with periods of relative or
absolute wellness, or it can cause a gradual decline in health. In
addition to this, pains and other debilitating and distressing symptoms
often present sporadically and unpredictably. Important consideration for
our AIDS palliative care services are the variability in the disease
progression and poor accuracy of clinical and laboratory prognostic
These unknowns cause difficulties in planning and delivering care. In the
absence of evidence-based referral criteria, clinicians are often
uncertain when to admit and treat aggressively and when to offer only
palliative care. Social services similarly encounter difficulties when
allocating welfare support. Immune-suppressed patients, confused by the
AIDS disease trajectory, have been reluctant to start ARV therapy whilst
they still feel well, others, on recovering from opportunistic infections,
do not believe that AIDS is fatal without antiretroviral treatment.
Gaining a better understanding of AIDS trajectories in the presence
and absence of ARV therapy, and communicating them to health care workers,
the patients and the general public, would greatly assist in the provision
of restorative treatment or palliation by the introduction and withdrawal
of palliative care as required.
(1) Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and
palliative care. BMJ 2005 Apr 30;330(7498):1007-11.
(2) Groenewald P, Nannan N, Bourne D, Laubscher R, Bradshaw D.
Identifying deaths from AIDS in South Africa. AIDS 2005 Jan 28;19(2):193-
(3) Lynn J. Perspectives on care at the close of life. Serving
patients who may die soon and their families: the role of hospice and
other services. JAMA 2001 Feb 21;285(7):925-32.
Competing interests: No competing interests
It was uplifting to me to read the simple wisdom of Scott Murray and
his colleagues in their paper entitled Illness trajectories and palliative
I would like to make several observations -- firstly that the value
of the "trajectory" concept is not confined to slowly progressive
conditions that lead to death and that this concept can be and should be
extended to acute illnesses, including in particular critical illnesses.
Secondly, intensivists are frequently referred patients with the
trajectories presented by these authors, where the decline has been
punctuated by an acute deterioration which has dominated the presentation
so that the underlying trajectory has been overlooked or underappreciated.
There is an opportunity (often sadly overlooked) for all involved to take
stock and appraise both the acute deterioration and the less evident
trajectory before embarking on a technological rescue imperative. Examples
include the frail elderly patient with anticoagulant-associated
spontaneous intracranial bleeding who presents in coma with focal signs,
or the patient with dementia and multiple organ dysfunction who presents
with a "potentially curable" but fungating mandibular tumour.
Thirdly, even patients without underlying "slowly failing health" can
and do develop faster trajectories of dying -- sometimes after
hospitalisation or even after admission to intensive care units. What
appears to me after 30 years exposure to intensive care medicine is a
growing tendency to attempt progressively technological escalated rescue
of increasingly daunting complications as the patient loses handhold after
handhold while falling slowly down the cliff. Examples include the patient
with severe acute pancreatitis who develops first infected necrosum, then
intrabdominal absesses and finally drain-associated erosion of
Finally, I have been searching for a graphical way to convey the
concept that since critical illness often leads to death and prediction of
individual outcome in intensive care units is poor, particularly soon
after admission, it is imperative that all critically ill patients receive
good "end-of-life care" from the moment of admission, even though most of
them will recover from their critical illness. I am grateful to the
authors for Figure 2 in their paper. The critical care literature,
including recommendations from erstwhile professional societies (Reference
1), is seemingly stuck with the old concept of a moment in time before
which there is (only) a "curative" objective and after which there is a
"palliative" or "comfort" objective. This "moment in time" concept creates
unneccessary difficulty when an unfavourable "acute illness trajectory" is
evident (such as "failure to thrive") and can leave the patient (and their
family) bereft of the opportunity for preparation for death while
"curative" therapies are increasingly escalated and emotional and
spiritual needs are overlooked.
Truog RD, Cist AF, Brackett SE, Burns JP, Curley MA, Danis M, DeVita
MA, Rosenbaum SH, Rothenberg DM, Sprung CL, Webb SA, Wlody GS, Hurford WE.
Recommendations for end-of-life care in the intensive care unit: The
Ethics Committee of the Society of Critical Care Medicine. Crit Care Med.
Competing interests: No competing interests