What are the final stages of congestive heart failure?

Increasing interest and research into the care of the dying over the past 25 years have resulted in better symptom control, psychological support, and choice for people dying from cancer and their families.1 Little attention has been paid, however, to patients with other life threatening diseases, such as AIDS, neurological conditions, respiratory failure, and heart failure. Palliative care, with its emphasis on the care of patients whose prognosis is limited, on quality (not quantity) of life, and on a multidisciplinary approach, may benefit patients other than those with cancer. One such group is patients dying from heart failure.

Heart failure is the only major cardiovascular disease with increasing prevalence, incidence, and mortality. Incidence and prevalence both increase dramatically over the age of 75 years—up to 43.5 and 190 per 1000 population respectively.2 With age adjusted mortality from cardiovascular disease declining and the size of the elderly population growing, the absolute number of individuals living with compromised cardiac function is expected to increase dramatically over the next few decades.3 Modern treatments for heart failure slow but do not arrest progression of the disease. Despite the wealth of therapeutic advances, quality of life in chronic heart failure is poor4 and discomfort and distress often worse than in cancer.5

In the United Kingdom only one study has investigated symptoms in terminal heart disease: the regional study of care for the dying.6 This was a population based retrospective survey of a random sample of people dying in 20 English health districts in 1990. People who died from heart disease, including heart failure, had experienced a wide range of symptoms, often distressing and often lasting more than six months.7 In addition to dyspnoea, pain, nausea, constipation, and low mood were common and poorly controlled. At least one in six had symptoms as severe as those in patients with cancer managed in hospices or by palliative care services. Although many were thought to have known that they were dying, open communication with health professionals was rare.8

In the United States the SUPPORT study included 263 patients with heart failure.9 It showed severe symptoms in the last three days of life in patients with heart failure: 65% were breathless and 42% had severe pain. Forty percent of these patients received a major treatment intervention in the last three days of life, suggesting that doctors had not recognised the closeness of death. A salutary finding was that intervention by specially trained nurses to enhance decision making and improve patient care had no impact on symptom control or other outcome measures.

In heart failure, as in most diseases, the first step towards symptom control is optimisation of treatment of the underlying disease. The regional study of care of the dying suggests that this is not enough. The need for improved symptom control and greater emphasis on quality of life has been recognised,10,11 but research into and provision of services for care of patients with end stage heart disease have been neglected.12 Nurse practitioners have been advocated to help with patient management and may be effective.12 Several trials are underway, but these may be premature since the needs of these patients have not been defined. Cost effective, appropriate, and acceptable services for these patients cannot be developed in the absence of good information on what their needs are and when to intervene to improve their lives.

The findings of the SUPPORT study suggest that the use of resources for the care of patients with heart failure will need to be imaginative to be effective. Anecdotal evidence exists that palliative care teams have managed patients with heart failure successfully using the same approach that helps cancer sufferers, but conventional hospice and specialist palliative care services could be overwhelmed by heart disease. Indeed, different models of care may be needed since patients with heart failure are more prone to sudden death than patients with cancer and do not necessarily have a clearly defined terminal phase. Specialist heart failure nurses may founder if they work in isolation. Palliative care is recognising the need to take stock of other terminal illnesses. Now is the time to collaborate and accelerate this change.

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Objective: To characterize the experiences of patients with congestive heart failure (CHF) during their last 6 months of life.

Design: A retrospective analysis of data from a prospective cohort study.

Setting: Five geographically diverse tertiary care academic medical centers.

Participants: A total of 1404 patients enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) with a diagnosis of an acute exacerbation of CHF, of whom 539 patients died within 1 year of their index hospitalization.

Methods: Data from interviews with patients or their surrogates were collected and chart abstractions performed at several time points in SUPPORT. To describe progression to death, we constructed four observational windows backward in time, beginning with patients' dates of death and ending with their date of entry into the SUPPORT project or 6 months before death, whichever came first. For each outcome, patients contributed information to all windows for which they had data collected. We describe frequency distributions for each outcome over time and report tests for trend.

Outcome measures: Outcomes examined over time included: percentage of days spent in a hospital; model-based prognostic estimates of 6-month survival; functional status; occurrence of severe physical and emotional symptoms, including pain, depression and anxiety; patients' preferences for care; and the financial impact of patients' illnesses on their families.

Results: As death approached, patients' prognoses became poorer and illnesses more severe. Median Acute Physiology Scores for hospitalized patients rose from 33 in the interval 6 months to 3 months before death, to 44 within 3 days of death. However, the median model-based estimate of 6-month survival was 54% even within 3 days of death. Number of functional impairments, median depression scores and percent of patients reporting severe pain or dyspnea increased as death approached, with 41% of patient surrogates reporting that the patient was in severe pain and 63% reporting that the patient was severely short of breath during the 3 days before death. Perceived quality of life did not change appreciably, with 29 to 58 % of patients reporting good to excellent quality of life in all intervals before death. As death approached, patients were more likely to prefer Do Not Resuscitate (DNR) status, with the percent of patients preferring DNR rising from 33% at 6 months to 3 months before death to 47% at 1 month to 3 days before death (P < .05). The frequency with which DNR orders were written for hospitalized patients also increased as death approached. The patients' illnesses had marked financial impact on their families, with 23 % of patients' families reporting the loss of most or all of family savings at the time of the patient's death.

Conclusions: As death approaches during the last 6 months of life in CHF, illness becomes more severe, disability and the experience of certain symptoms more frequent, and patient preference not to be resuscitated more common. However, there is no significant decrement in quality of life as death approaches. Reflecting the unpredictable course of CHF during the last month of life, many patients have good median model-based 6-month prognoses and enjoy good to excellent quality of life.