Care for all at the end of life

Abstract

Scott Murray and Aziz Sheikh say that the lessons learnt from palliative care for cancer need to be applied to other fatal conditions. Healthcare delivery that is tailored to the varying needs of patients with these diseases will be crucial in making a difference, says Joanne Lynn (doi: 10.1136/bmj.39535.656319.94)

We must apply the lessons learnt from cancer (often slowly and painfully) to the growing number of people now dying from non-malignant illnesses. New theoretical insights into the trajectories of decline in a range of long term conditions—together with technical developments that aid the delivery of care in people’s own homes and the timeless clinical qualities of listening, compassion, empathy, and inspiring hope—mean that we now have the means to make a real difference to the lives of so many people in the throes of their final illness and to the lives of their loved ones. Getting end of life care “right” lies at the heart of what it means to be a civilised society, and thus prioritising this area needs no apologies.

In 2005 cancer was responsible for a relatively small percentage of deaths worldwide (13%), while other long term conditions caused 47%.¹ By 2030 the annual number of deaths around the world is expected to rise from 58 million to 74 million, with conditions related to organ failure and physical and cognitive frailty responsible for most of this increase.² Yet despite these rapid demographic changes, palliative care services typically still cater only for people with cancer.^{3 4} For example, hospices in economically developed countries currently provide 90% of their care to patients with cancer. Moreover, people dying from cancer usually have needs lasting for weeks or months, whereas those dying from organ failure or old age often have unmet needs that extend over many months or years. It is little wonder, then, that people dying of the “wrong” condition and their carers, whether family, social, or professional, are increasingly frustrated by the major obstacles to accessing appropriate care.⁵

The drive to extend palliative care beyond cancer has so far been hampered by a combination of factors: prognostic uncertainty; funding difficulties (in the United Kingdom influential cancer charities support many hospices and outreach programmes); lack of palliative care clinicians with expertise in non-malignant diseases; and a hitherto relatively weak evidence base in relation to appropriate models of care. Although the empirical evidence base remains weak, we do now have a good theoretical understanding of when and how to intervene in a range of conditions.

Prognostic uncertainty can and does hinder clinicians in thinking and planning ahead. Most patients with heart failure die when they are still expected to live for more than six months, and accurate prognostication is also virtually impossible in people with chronic obstructive pulmonary disease (COPD).^{6 7} Although this uncertainty is frustrating for doctors, its very presence can be a basis for initiating end of life discussions.⁸

Recent work is helpful in identifying critical events and stages when a palliative approach may be introduced.⁹ People with progressive chronic illnesses follow three characteristic trajectories: a cancer trajectory, with steady progression and usually a clear terminal phase; an organ failure trajectory, with gradual decline punctuated by episodes of acute deterioration and eventually a seemingly unexpected death; and a trajectory of prolonged gradual decline (typical of physical or cognitive frailty).¹⁰

Figure 1: The three main trajectories of decline at the end of life

Hospices provide excellent and accessible care to people with cancer but are not configured to address the needs of patients who don’t have cancer. So what can we do? A typical critical juncture in an organ failure trajectory, such as hospitalisation for acute heart failure or an exacerbation of COPD, should trigger a holistic assessment and care plan for the next stage of the illness. Practical models of care are now being formulated and tested to fit the other two trajectories. Some Scottish general practitioners are, for instance, documenting a care plan for every patient admitted to hospital with COPD. Clinicians are thus alerted to “change gear” from routine chronic disease management to a more personalised palliative care approach, while continuing active treatment. These trajectories thus help us consider what should be done to promote quality of life rather than focus on what can be done, which may lead to futile treatment. A strategic policy overview of these trajectories may also help services to consider all people with serious chronic illnesses equitably, rather than cancer “top slicing” care.

Palliative care for everyone underscores the need for anticipatory personalised care for all people with life threatening illnesses. Technical developments such as video conferencing and remote monitoring devices may help in realising this aspiration, but far more important are the medical vocation’s essential clinical skills—active listening, respecting autonomy, and empathic care—none of which depends on first world infrastructures. These can be implemented anywhere in the world, as long as health services respect the importance of clinicians and patients having time together, ideally in the context of a relationship that allows for personal continuity of care.

Facilitating a good death should be recognised as a core clinical proficiency, as basic as diagnosis and treatment. Death should be managed properly, integrating technical expertise with a humanistic and ethical orientation. We also need research into how best to identify, assess, and plan the care of all patients who are sick enough to die, and we need education that keeps alive our humanity and sense of vocation. This is an enormous challenge in politicised, market driven healthcare models but one that will make an important difference to those most in need.