Consultation rates falling as GPs do not prescribe
Trajectories of typical illnesses can help GPs plan and deliver appropriate care, says Dr Scott Murray
The question 'How long have I got?' is asking about more than just life-expectancy. Within this question is another, often unspoken, one: 'What will happen?' Trajectories of typical illness are an aid to answering both these questions and can help us plan and deliver appropriate care.
A century ago, death was typically sudden with the leading causes being infections, accidents and childbirth. Today in the UK, sudden death is less common. Three distinct illness trajectories have been described so far for people with progressive chronic illnesses:
·Cancer trajectory, with steady progression and usually a clear terminal phase
·Organ failure trajectory (eg respiratory and heart failure), with gradual decline, punctuated by episodes of acute deterioration and some recovery, with more sudden, seemingly unexpected death
·Frail elderly and dementia trajectory, with prolonged gradual decline.
One size may not fit all
Different models of care will be appropriate for people with different illness trajectories. The hospice-based model might not best suit people who have a gradual, progressive decline with unpredictable exacerbations.
As GPs we are well placed to understand the needs of, and the services available to, people on the main trajectories. We, more than anyone else, can provide palliative care for our patients in all these trajectories, and from early on in each trajectory.
'Doing everything that can be done for a possible cure' may be misdirected
Understanding and considering trajectories may help us take on board, at an earlier stage than would otherwise be the case, that progressive deterioration and death are inevitable. Patients often want palliative oncological treatment even if it is extremely unlikely to benefit them, and doctors usually offer it to maintain hope as well as to treat disease.
An outlook on death and expectations that are more acquiescent to reality may moderate the 'technological imperative', preventing unnecessary hospital admissions or aggressive treatments. A realistic dialogue about the illness trajectory between patient, family and professionals can allow the option of supportive care, focusing on quality of life and symptom control, to be grasped earlier and more frequently.
Most people on these three paths want to spend their time at home if possible. An appreciation that all trajectories lead to death, but that death may be sudden (particularly in those following trajectory two), makes it evident that advanced planning is sensible, and best done early.
An advanced care plan may include holistic needs assessment and care planning, including:
·Notification of details to NHS Direct/NHS 24
·Discussion of preferred place of care
·Discussion of support for family carer.
Empowering for patient and carer
Some patients attempt to gain control over their illness by acquiring knowledge about how it is likely to progress. Had CC (box 1), who had lung cancer, been aware of his likely course of decline he might have been less worried about a very protracted death.
Similarly, his wife might have been less worried about a sudden death. Patients certainly can understand their trajectory when I graph it in the air!
Trajectory 1 progressive cancer
This involves 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 oncology treatment.
Most physical decline and impaired ability for self-care occurs in the last few months. Specialist palliative care services help many at the end of this trajectory.
CC, a 51-year-old male shop assistant, complained of night sweats, weight loss and a cough. X-ray initially suggested a diagnosis of tuberculosis, but bronchoscopy and a CT scan revealed an inoperable, non-small cell lung cancer.
He was offered and accepted palliative chemotherapy. Looking back, CC expressed regret that he had received chemotherapy: 'If I had known I was going to be like this....' His wife felt they had lost valuable time together when he had been relatively well.
CC feared a lingering death: 'I'd love to be able to have a wee turn-off switch, because the way I've felt, there's some poor souls go on for years and years like this and they never get cured. I wouldn't like to do that.'
CC's wife, in contrast, worried that her husband might die suddenly: 'When he's sleeping, I keep waking him up, I am so stupid. He'll say "Will you leave me alone, I'm sleeping".'
CC died at home three months after diagnosis. Medical, nursing and social work support were available to allow this.
Trajectory 2 organ failure
With conditions like 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 hospitalisation and intensive treatment.
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.
Mrs HH, a 65-year-old retired bookkeeper, had a number of hospital admissions with cardiac failure. She was housebound in her third-floor flat, and cared for by a devoted husband. Previously she had been very outgoing, but became increasingly isolated.
Her major concern was her rapidly deteriorating vision due to diabetes preventing her completing crosswords, not her stage IV heart failure. Her treatment included high-dose diuretics and long-term oxygen therapy.
Mrs HH died on the way
home from a hospital admission due to a nosebleed. Attempted resuscitation took place in the ambulance. Her husband later expressed deep regret that his wife's clear wish not to have her life prolonged was not respected.
Trajectory 3 increasing physical frailty or dementia
Those who escape cancer and organ system failure are likely to die at an older age of either brain failure or generalised frailty of multiple body systems.
This third trajectory is of progressive disability from an already low baseline of cognitive and/or physical functioning. Such patients may lose weight and functional capacity and then succumb to minor physical events. This trajectory may be cut short by death following an acute event such as a fractured neck of femur or pneumonia.
Mrs LC, a 92-year-old widow, lives alone in a ground-floor flat in central Edinburgh. Bereaved 12 years ago, she is now housebound due to arthritis and general physical frailty.
She used to venture out occasionally to the shops, but over the years has felt less able and confident, largely on account of a fear of falling. She appreciates the chair and walking aids supplied by the occupational therapist as these provide support and a sense of security at home.
She receives regular visits from friends and the local church, and is undemanding of services.
Mrs LC understands her current trajectory in terms of gradual decline in activities she is able to do, and is concerned that she might one day lose her independence. She has no relatives, but is supported by her trust in a God who 'should be sending for me now'.
Scott Murray is clinical reader, primary palliative care research group, general practice section, University of Edinburgh
This article has been adapted and reproduced with permission from the BMJ Publishing Group, BMJ, 2005, vol 330, 1007-1011