End-of-life care for patients with chronic disease: the need for a paradigm shift

An Advanced Care Plan provides the opportunity for patients, their family, and health care providers to enter into the territory of “end-of-life”. Importantly, it opens up conversations. In many cases it is liberating – from denial of the reality that a patient is experiencing and from fear of what might lie ahead. The New Zealand Advanced Care Planning (ACP) Co-operative has been established through the Ministry of Health. Excellent guidelines on the principles and application of ACP have just been published.^2,3 Advanced Care Planning is not the prerogative of a single professional group - specialists, General Practitioners or palliative care physicians.

In Dunedin, we have started a Respiratory Failure Supportive Care Clinic which includes, among other things, the opportunity to introduce the concept of ACP. The qualification for referral to the clinic is the so-called “surprise question”, i.e. would we be surprised if the patient were to die within the next year? Areas for discussion include the medical prognosis, the patient’s hopes and fears for the future, palliative treatments that are currently needed, as well as ACP, i.e. treatments that would be acceptable and those that would be excessive or futile in the event of acute deterioration. A generic ACP needs to be modified for specific disease groups such as patients with respiratory failure, and we have recently done so.

A generic Advanced Care Plan is available from the Advanced Care Co-operative website: http://acp.hiirc.org.nz

Try as everyone might, there are still occasions when acute-on-chronic deterioration is too distressing to be managed at home and patients present to hospital. The context of deterioration needs to be urgently considered (is this an end-of-life or terminal event?). The concept of Ceiling of Care is relevant in this setting, and derives from the ACP. The aim is to provide guidance to admitting staff who do not know the patient, so that there is continuity with the patients’ previously expressed wishes, and/or limitations to their treatment are clear. We are currently working to have Ceiling of Care information electronically tagged to the patient’s NHI (Figure 1), so that on admission the information is readily available. Of course patients may change their minds about how much intervention is desirable or appropriate – the approach cannot be rigid. But in our experience having the “ceiling of care” defined at the time of admission provides direction and security, particularly to nursing staff, as to how the patient is to be managed. In some centres, the Liverpool Care Pathway is also used, again providing a framework for appropriate in-patient management (and not abandonment) of patients who are terminally ill.

See “Liverpool Care pathway” BPJ 36 (Jun, 2011)

There is also immense scope for improving end-of-life care in the patient’s home and in rest homes, and many in the primary care sector are working to this end. The introduction of ACP in rest homes is an obvious need. But the tool cannot be applied in isolation. Developing the palliative care skills of community and practice nurses as well as rest home carers is an obvious area where resources need to be allocated. In Otago/Southland criteria for providing “Year of Care” support is going to be extended in 2012 to include end-of-life patients, identified using the “surprise question”. This is an example of how an appropriate philosophy of care and resource allocation can be integrated.

Perhaps the most powerful incentive to improve end-of-life care is that this is what patients want,^4,5 and it is something that we would want for ourselves. Attitudes to death and dying from cancer have been powerfully and positively influenced by the hospice movement. But the philosophy of care which has been nurtured in that particular setting now needs to be extended and integrated into institutions where “cure and mend” has historically been the over-riding objective. The time has come for “both … and” rather than “either … or”. The Southern DHB is currently considering proposals for its “Putting the Patient First” Strategic Plan (Table 1).

Patients at the end of life do not always want – and do not necessarily need – vigorous interventions but quality supportive care.⁶ Quality improvement for such patients will be achieved not by straining indefinitely to extend life via acute medical services, nor by abandoning them when these fail. Adjusting what we do in the light of the diagnosis of dying, and managing the approach to death positively and meaningfully needs to be integrated into all clinical services, not just a few, so that a “good death” is included in what we mean by quality of life.