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Different trajectories for different diseases

A century ago, death was typically quite sudden, and the leading causes were infections, accidents, and childbirth. Today sudden death is less common, particularly in Western, economically developed, societies. Towards the end of life, most people acquire a serious progressive illness—cardiovascular disease, cancer, and respiratory disorders are the three leading causes—that increasingly interferes with their usual activities until death.

Three distinct illness trajectories have been described so far for people with progressive chronic illnesses (fig 1)^2–6: a trajectory with steady progression and usually a clear terminal phase, mostly cancer; a trajectory (for example, respiratory and heart failure) with gradual decline, punctuated by episodes of acute deterioration and some recovery, with more sudden, seemingly unexpected death; and a trajectory with prolonged gradual decline (typical of frail elderly people or people with dementia).

Fig 1

Typical illness trajectories for people with progressive chronic illness. Adapted from Lynn and Adamson, 2003.⁷ With permission from RAND Corporation, Santa Monica, California, USA.

We now consider each of these three trajectories in more detail.

Trajectory 1: short period of evident decline, typically cancer

This entails a reasonably predictable decline in physical health over a period of weeks, months, or, in some cases, years. This course may be punctuated by the positive or negative effects of palliative oncological treatment. Most weight loss, reduction in performance status, and impaired ability for self care occurs in patients’ last few months. With the trend towards earlier diagnosis and greater openness about discussing prognosis, there is generally time to anticipate palliative needs and plan for end of life care. This trajectory enmeshes well with traditional specialist palliative care services, such as hospices and their associated community palliative care programmes, which concentrate on providing comprehensive services in the last weeks or months of life for people with cancer. Resource constraints on hospices and their community teams, plus their association with dying, can limit their availability and acceptability. Box 1 illustrates this trajectory.

Trajectory 2: long term limitations with intermittent serious episodes

With conditions such as heart failure and chronic obstructive pulmonary disease, patients are usually ill for many months or years with occasional acute, often severe, exacerbations. Deteriorations are generally associated with admission to hospital and intensive treatment. This clinically intuitive trajectory has sharper dips than are revealed by pooling quantitative data concerning activities of daily living.⁴ Each exacerbation may result in death, and although the patient usually survives many such episodes, a gradual deterioration in health and functional status is typical. The timing of death, however, remains uncertain. In one large study, most patients with advanced heart failure died when expected to live for at least a further six months.⁸ Many people with end stage heart failure and chronic obstructive pulmonary disease follow this trajectory, but this may not be the case for some other organ system failures. Box 2 illustrates this trajectory.

Trajectories allow practical planning for a “good death”

Dying at home is the expressed wish of around 65% of people at the beginning of the cancer and organ failure trajectories.¹³ An appreciation that all trajectories lead to death, but that death may be sudden (particularly in patients following trajectory 2), makes it evident that advanced planning is sensible. Eliciting the “preferred place of care” is now standard in some palliative care frameworks and helps general practitioners plan for terminal care where the patient and family wish. This may increase the likelihood of patients dying in the place of their choice, as was the case for CC (see box 1).

Sensitive exploration is needed and can allow issues such as resuscitation status to be clarified and “unfinished business” to be completed for patients on all these trajectories. However, advance directives may be ignored in the heat of the moment.¹⁴ Mrs HH’s death had (unusually in people with heart failure) been planned, but an emergency overtook the situation and she received inappropriate resuscitation as documentation was not at hand. Living wills (advance directives) may be becoming more popular with patients, but most primary care professionals still have relatively little experience with these (Polack C, personal communication, 2004). Such planning may be particularly relevant to people in the third trajectory, where progressive cognitive decline is common.

Planning care in advance may prevent admissions

Planning care and providing resources in advance on the basis of these trajectories might help more people die where they prefer. For example, many frail elderly and patients with dementia are currently admitted to hospital to die when terminally ill. The use of end of life care pathways in nursing homes is proving increasingly effective in preventing such admissions.¹³