Palliative care

A basic human right

The global HIV pandemic has raised awareness of the need to provide care for those suffering from incurable diseases. Palliative care aims to maximise the quality of life and relieve the suffering of patients and their families.

Since its origin in the UK's hospice movement during the 1960s, palliative care has become a medical specialty and multi-professional team service for patients and their families. It now exists on every continent, but is only in its infancy in many countries and entirely absent in others.

Palliative care also focuses on providing care and support for carers and families. The breadth of support and intervention addresses the clinical needs of patients such as pain and symptoms as well the psychosocial, social and spiritual needs of those affected during the course of the disease and into bereavement.

Palliative care was developed in response to the needs of patients with advanced cancer, but is also an essential component of care for non-malignant disease. It has a central role in the management and support of those affected by other conditions such as neurological disease, cardiac failure and dementia.

Managing total pain

Palliative care deals with all kinds of pain: physical, emotional and spiritual. Through assessment and management of pain, in conjunction with therapeutic strategies where appropriate, palliative care aims to improve the quality of the patient's life and to provide the best possible death. In this way, palliative care adds life to years not necessarily years to life. However, integrated palliative and curative approaches offer the potential to hope for the best whilst preparing for the worst.

Research shows that specialist palliative care improves outcomes for patients with advanced disease, improving pain and other symptoms. For palliative care to work, training for nurses and doctors is essential in addition to a distinct and recognised discipline of palliative medicine. In this way, practitioners can apply basic palliative care skills whilst more complex cases can be referred to specialist teams. In this issue of id21 insights Liz Gwyther describes the importance of education at all levels, including strengthening postgraduate training opportunities to produce appropriately skilled staff.

It is important that palliative care is delivered by a multi-professional team including doctors, nurses, social workers, occupational and physical therapists, counsellors, psychologists as well as music and art therapists, to address all the needs of patients and their families - social, psychological, and physical.

However, a hallmark of palliative care is often seen as expertise in pain and symptom control. Good quality pain control should be a basic human right but without access to a specialist palliative care team, patients often endure very distressing pain that could be easily managed. The recommended way to control pain is described in the World Health Organization's (WHO) pain ladder (see Figure 1, below). To avoid unnecessary pain, oral analgesics should be given regularly.

Figure 1 (see a larger version)

Palliative care in poor countries

The growth of palliative care in resource-poor countries has enabled many more people with progressive illnesses to access pain, symptom control and supportive care. However, although all national and international associations generally adhere to the WHO definition of palliative care, how that translates into practice varies.

Meeting all the needs of the patient and family is a huge task in the absence of well resourced welfare systems. Advanced disease may push a family from poverty to destitution. Yet, the growth of palliative care has, as described by Anne Merriman and Suresh Kumar, pioneered models of care relevant to regional circumstances. The 'hospice', as an inpatient building, has evolved into the presence of hospices in rural areas with outreach and trained community workers, some of whom even dispense drugs through roadside hospice vehicles. Palliative care has also come into existence through advocacy activities, as highlighted by Faith Mwangi-Powell, particularly in securing access to opioids (pain relief drugs). As Liliana De Lima describes, some countries have not found it easy to achieve the WHO measures. Clearly, coordination between donors, advocacy workers and trainers is essential.

Integration of palliative care

Palliative care is essential to any public health strategy. Indeed, modern palliative care protocols and the plethora of training resources and cheap provision of oral morphine have made palliative care cheap and easy to carry out: it can be provided by all members of a care team from the point of diagnosis onwards.

The traditional view of palliative care as a specialist area introduced at the end of the patient's life has altered. Increasingly, the aim is to provide palliation from the point of diagnosis (Figure 2, below).

Figure 2 (see a larger version)

HIV and palliative care

The WHO has described palliative care as an essential part of quality HIV care. Palliative care improves quality of life for patients with HIV - relieving pain and controlling anxiety and spiritual wellbeing. It can be introduced and withdrawn as necessary and offered alongside antiretroviral (ARV) drugs.

Even in countries with universal access to ARV therapy, people with HIV are still more likely to die earlier than the uninfected. Symptoms are experienced throughout the course of the disease and are historically poorly managed. As Sarah Cox states, palliative care can improve the quality of life of HIV patients by managing:

• infections that can occur as a result of medication to strengthen immunity
• symptoms associated with ARVs
• diseases that may occur as life expectancy increases, such as cerebrovascular disease or liver failure
• end-of-life care when a patient presents late with advanced HIV.

Achieving palliative care for all

Palliative care is an essential component of health care. The use of opioids is a cheap, effective and safe means of managing pain and is a basic right. Although enormous gains have been made, provision is still inadequate and coverage patchy. Impressive advances have been made in developing countries, however. Pioneering services offer valuable lessons on how palliative care can be provided for all those who need it. As Suresh Kumar and Anne Merriman show from India and Uganda, no country can justify the absence of palliative care in its health system.

National associations, such as the African Palliative Care Association described by Faith Mwangi-Powell, and international non-governmental organisations are essential in starting services and maintaining quality. As Olivia Dix shows, they should be included in strategic donor activity and advocacy. Both practitioners and academics need to come together in supporting service expansion and in designing educational opportunities.

Policy recommendations drawn from this issue of id21 insights include:

• Palliative care should be articulated in every country's Public Health Plan.
• All health care practitioners should have basic training in palliative care.
• Palliative care should be a specialised training option for doctors and nurses.
• Opioids for pain relief should be on the essential drug list of every country.
• Donors should ensure that palliative care is a component of health care delivery for all who need it.
• All patients and families affected by incurable disease should be continuously assessed with respect to the detection and management of pain: physical, emotional and spiritual.
• Coordinated lobbying for palliative care should make strategic use of national and regional associations.
• While palliative care may vary regionally, the WHO definition and full use of the pain ladder should be the goal of all advocacy and care activities.
• Palliative care should be integrated into existing health care services where possible, with specialist services available for complex cases.
• Palliative care should be available alongside curative care and integrated as early as possible during the course of disease, including provision alongside antiretroviral therapy.

Richard Harding
Palliative Care and Policy, King's College School of Medicine, Weston Education Centre, Cutcombe Road, London SE5 9RJ, UK
T +44 (0) 20 7848 5589
F +44 (0) 20 7848 5517
richard.harding@kcl.ac.uk

See also

Is there Evidence that Palliative Care Teams Alter End-Of-Life Experiences of Patients and their Caregivers?, Journal of Pain and Symptom Management 25(2), pages 150-168, Irene Higginson et al., 2003

Palliative Care in Sub-Saharan Africa: an Appraisal of Reported Activities, Evidence and Opportunities, The Lancet 365, pages 1971-1977, by Richard Harding and Irene Higginson, 2005

Does Palliative Care Improve Outcomes for People with HIV/AIDS? A Systematic Review of the Evidence, Sexually Transmitted Infections 81, pages 5-14, Richard Harding et al., 2005

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