When should one start palliative care?

LIZ GWYTHER, MB ChB, FCFP, MSc Pall Med

Senior Lecturer, Division of Family Medicine, University of Cape Town, and CEO, Hospice Palliative Care Association of South Africa

Correspondence to: L Gwyther (liz@hpca.co.za) 

The WHO definition of palliative care1 states that it is applicable early in the diagnosis in conjunction with other therapies that are implemented to prolong life. 

The WHO definition of palliative care for children states that it begins when illness is diagnosed, and continues regardless of whether a child receives treatment directed at the disease. 

South African palliative care practitioners, the Hospice Palliative Care Association and the Worldwide Palliative Care Alliance1 endorse the WHO definition of palliative care and provide such care to patients with life-threatening illness from the time of referral to a hospice or a palliative care service. Hospice personnel frequently comment that patients are referred very late and do not experience the full benefit of the service. 

There are a number of misconceptions with regard to palliative care that limit access to it. This article considers some of these and then describes how one can improve access to palliative care for those who need this approach. 

Is palliative care only care of the dying patient? Palliative care practitioners and hospice personnel do provide quality, compassionate end-of-life care, with support for family members, to a person who is dying. Hospices also provide bereavement care to family members after the death of a loved one. However, palliative care personnel also support people in the active phase of their treatment. The focus of palliative care is on control of distressing symptoms, emotional support, social support and spiritual care with a goal of helping people with life-threatening illness ‘to live as actively as possible’. 

Is palliative care only compassionate companionship of dying patients? Palliative care is a clinical discipline involving careful assessment and active treatment of distressing symptoms, including identification and treatment of the cause of the symptoms. It aims to relieve suffering, and the response to multidimensional suffering2 involves an interdisciplinary team of health carers to respond to a particular person’s needs. Palliative care is provided in conjunction with appropriate disease-specific treatment, and hospice staff work in collaboration with the oncologist, GP, HIV clinic and other health care resources. 

Is palliative care only for cancer patients? Palliative care developed as a response to cancer patients experiencing severe pain as their disease progressed. The principles and practice of palliative care are effective in the care of patients with any life-threatening illness, and many particular palliative care skills such as empathetic communication skills and control of distressing symptoms are applicable in any health care setting. Patients with heart failure, progressive neurological disorders, renal failure, and advanced HIV also benefit from palliative care. The WHO paediatric definition states that palliative care ‘principles apply to other paediatric chronic disorders’. This is also true of adults with chronic illness, but is a hospice the most appropriate place of referral for patients with chronic illness? 

One of the benefits of palliative care is that it can be provided in any setting – the patient does not have to come to a health care facility to access such care. The palliative care practitioner can bring care to the patient – in the GP’s rooms, hospital, emergency unit, ICU, frail care centre, hospice, and patient’s home. The only requirement is that the health care practitioner – doctor, nurse, oncologist, HIV clinician – is trained in palliative care and applies the appropriate principles to the stage of the person’s illness. 

Palliative care personnel have identified that, in order to provide appropriate care to patients with progressive illness, it is important to discuss a person’s wishes while she/he is still able to have such conversations. It is also important to develop an appropriate care plan – but how can one identify these patients, given the recognised uncertainties of prognostication? 

The Gold Standards Framework3 in the UK, which advises on establishing a palliative care service in general practices, recommends three triggers for palliative care: 
• the surprise question4 – would you be surprised if the patient were to die within the next 6 - 12 months? 
• patient choice or need 
• clinical indicators – specific indicators of advanced disease for three groups of patients: cancer, organ failure, elderly frail/dementia. In South Africa we would also include patients with advanced HIV and those with XDR TB, with particular challenges for comprehensive care.

The answer to the question posed in the title of this article is that palliative care can be offered from the time of diagnosis of a life-threatening illness; it can be provided by any health care practitioner trained in the discipline; and it can be provided in any setting, including the patient’s home.

Summary

Palliative care may be provided from the time of diagnosis of a life-threatening illness.

Palliative care is appropriate for patients with any life-threatening illness.

Patients who could benefit from palliative care may be identified by considering the ‘surprise’ question – would you be surprised if the patient were to die within the next 6 - 12 months?

All health care practitioners should be trained in palliative care.

References available at www.cmej.org.za