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Illness trajectories and critical care
- Stephen J Streat (29 April 2005)
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Illness trajectories for AIDS
- Natalya Dinat, Richard Harding (9 May 2005)
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Late referrals for Specialist Palliative Care for patients with non malignant conditions
- Dr. Lulu Kreeger, Dr. Eleni Tsiompanou, Staff Grade in Palliative Medicine, Kingston Hospital NHS Trust.. (24 May 2005)
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Stephen J Streat, Intensivist Department of Critical Care Medicine, Auckland City Hospital, Auckland 1003, New Zealand
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It was uplifting to me to read the simple wisdom of Scott Murray and his colleagues in their paper entitled Illness trajectories and palliative care. 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 retroperitoneal vessels. 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. Reference 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. 2001 Dec;29(12):2332-48. Competing interests: None declared |
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Natalya Dinat, Clinician Wits Palliative Care Department of Family Medicine University of the Witwatersrand South Africa, Richard Harding
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'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 indicators 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. Reference List (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- 201. (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: None declared |
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Dr. Lulu Kreeger, Consultant Palliative Medicine Kingston Hospital NHS Trust, Kingston Upon Thames, KT2 7QB, Dr. Eleni Tsiompanou, Staff Grade in Palliative Medicine, Kingston Hospital NHS Trust..
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Dear Editor, 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. References 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; 124(4): 414-421. 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: None declared |
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