Palliative care in chronic illness

We need to move from prognostic paralysis to active total care

Health, social, and palliative care services are continuing to fail many people with progressive chronic illnesses in whom death may be approaching, reflecting a failure to think proactively and holistically about their care.1 Such people could, however, readily be identified by clinicians asking themselves, “Would I be surprised if my patient were to die in the next 12 months?” For patients in whom the answer is no, delivery of patient centred active treatment and supportive care are needed.

Prognostic paralysis has been described, whereby clinicians of patients with uncertain illness trajectories prevaricate when considering end of life issues.2 For example, one general practitioner graphically summarised the feelings many experience in caring for people with terminal heart failure: “You're paddling down-stream to Niagara.” Another felt reduced to clinical tasks: “I feel impotent, merely a blood leech and monitor.”3 End stage chronic obstructive pulmonary disease is another example where patients seldom receive holistic care appropriate to their needs.4 Decision analysis in end stage renal failure should include the option of palliative care.5 Similarly, management of diabetes at the end of life may need to be altered to reflect different, more appropriate goals.6 To help overcome prognostic paralysis, quality improvement teams in the United States suggest that, rather than target patients who will die in the next six months, we should focus on those who “reasonably might die.”7 In the United Kingdom at least, opportunities now exist to initiate such an approach.

The new general practitioner contract has resulted in the establishment of many patients' registers, such as those for chronic obstructive pulmonary disease, ischaemic heart disease, and cardiac failure.8 Practices are now reimbursed for doing regular assessments and investigations, offering regular opportunities to identify those who may be entering the last months of life. When establishing these registers and reviewing those on them clinicians should routinely ask the question of anticipated prognosis.

Community nurses are playing a larger part in caring for people with chronic illnesses. Practice nurses reviewing people annually, district nurses caring for housebound patients, and health visitors proactively visiting the elderly could all periodically ask themselves this question as a trigger to adopting a holistic palliative care approach. Palliative care in the community can thus become more extensive and proactive.9

How might patients and professionals feel about a more proactive approach to palliative care? The acceptance of palliation requires a joint signing up by professionals, the patient, the family, or other carers. Early recognition is necessary, but not sufficient, for effective care. Most people with progressive chronic illnesses have already brushed with death and have competing narratives in their minds. On the one hand they hope that their condition will not deteriorate, and on the other they acknowledge that death is inevitable.1 Greater awareness of these conflicting narratives should make it easier for professionals to combine active treatment and a supportive approach. People with disabling, progressive illnesses expect active care, but they also seek comfort, control, and dignity. The barriers to effective communication about emotional and end of life issues are well recognised. Doctors' concerns include causing distress, damaging hope, and having time for such discussions. Patients and families have equal problems.10 An individual approach to sharing information in the context of a good professional-patient relationship is key.11 Some opening questions that might help professionals start to explore these issues with patients who wish to do so are given in the box.

Estimating prognosis is an inexact science,12 but prognostic uncertainty should not prevent us talking with our patients about this issue, as a noteworthy number will die suddenly. We must not inadvertently fall into the trap of prognostic paralysis. So when we are next monitoring prognostic indicators and observe an irreversible decline, why not simply ask ourselves: “Would I be surprised if my patient were to die in the next 12 months?” And if the answer is no, we need to give the patient and his or her family an opportunity to plan for a good death, instead of just monitoring a downward set of physical variables until death.