Palliative Care

The contemporary concept of palliative care has its origins in the modern hospice movement. Beginning with Dame Cicely Saunders and the opening of St. Christopher's Hospice in 1967, the underlying philosophy of palliation included holistic care (emphasising emotional, social and spiritual needs) taken hand-in-hand with a progressive approach to managing end-of-life symptoms medically. The movement's success is reflected in how universally accepted these goals now are, if not actually universally available yet.¹ Many continue to be fearful of palliative care since they wrongly consider it synonymous with terminal care so it is important to understand its evolution:

• Beyond cancer care to greater inclusiveness. For many years, palliative care largely meant the care of those with cancer and patients with progressive end-stage disorders besides cancer were denied access to these services despite prognoses and symptoms comparable to cancer. In the twenty-first century, palliative care is gaining expertise and becoming more inclusive of the many other diseases that afflict the population such as heart failure, COPD and dementia. Many chronic diseases, such as diabetes, ischaemic heart disease and parkinson's disease, are not considered imminently life threatening (although undoubtedly life-shortening) and, in some areas, referral to palliative care for assistance with difficult symptom control, outside the traditional remit, exists.
• Beyond providing symptom relief in the dying to the care and support of the living as well. WHO defines palliative care as "an approach that improves the quality of life of individuals and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".² The case for early palliative care was emphasised by a survey of British cancer patients, two-thirds of whom had experienced pain at the time of their first hospital visits but this was either not elicited or inadequately treated.³
• From end-of-life care to providing care over the entire disease trajectory. Optimising quality of life for patients and their families via the use of symptom control and good supportive care may be relevant at any or all points along the disease continuum - from pre-diagnosis, through diagnosis and treatment, to recovery or death. This change in perspective has been due partly to medical advances: many more individuals now 'survive' cancer or experience it as a chronic disease. The emphasis now lies on living with a 'killer' disease such as AIDS or cancer. Increasingly, individuals may receive palliation for diseases that will not be their ultimate cause of death. Most medical conditions are not cured, rather the symptoms are palliated and whilst, in practice, palliative care is usually reserved for those coping with life-threatening illness, the philosophy of palliation, supportive care elements and expertise in managing symptoms are widely applicable beyond this remit.
• To the co-existence of palliative and treatment approaches. Previously, palliative care was used as the only option for a patient when active treatment had failed. It is now appreciated that some aspects are applicable from much earlier in the patient's illness and can be used in combination with disease modifying or curative treatments.⁴ Patients and their families may equate palliative care with imminent death and 'hopelessness' so this should be explained carefully. Similarly, hospices are seen as places for people to die and frightened individuals may turn down admission for intensive symptom control or respite. Promote the capacity of palliative care to alleviate suffering and improve quality of life.

Each full-time GP will have an average of about 20 patient deaths per annum. Typically, 5 will be due to cancer, 5-7 organ failure (cardiac, renal, COPD), 6-7 through dementia, frailty and decline and 1-2 sudden deaths.⁶ Palliative care will be appropriate to many more patients in their care (the average GP has 40 patients with cancer, for example) at any stage in the disease and treatment path from pre-diagnosis to bereavement or survivor support.
The numbers of patients with dementia and frailty are climbing with an aging population - in 2006, over 680,000 people had a diagnosis of dementia; by 2050, this is expected to be 1,700,000. This will have implications for the type of palliative care we provide in the community.

In July 2004, the House of Commons Health Committee published its report 'Inquiry into Palliative Care in England'. It found:

• Gross inequality of access to hospice and other specialist palliative care services by diagnosis (95% went to people with cancer).
• NICE guidance on 'Supportive and Palliative care for Adults with Cancer'⁷ should be fully implemented and that its underlying principles should be extended to develop palliative care for patients suffering other life-threatening conditions.
• Issues surrounding choice of place of death:
  • 56% wish to die at home vs 20% actually die at home.
  • 24% wish to die in a hospice vs 4% actually die in a hospice.
  • 11% wish to die in a hospital vs 56% actually die in a hospital.

Palliative care provision in the UK

There are two distinct groups of health and social care professionals involved in providing palliative care:

1. 'Non-specialists' involved in day-to-day care and support of patients and their carers in their homes and hospitals. This group should be able to assess and meet the patient care needs under ordinary circumstances or to seek advice from/refer to specialist palliative care services in more challenging situations.
2. Specialist palliative care providers (e.g. consultant palliative care physicians or nurse specialists). Delivery of care may be via hospice, day centres, hospital or community teams or telephone advice services. Specialist palliative care funding comes in part from the state and much from voluntary organisations, charities and local-fundraising. Only 35% of adult hospice income comes from the NHS.

Supportive care

There is a reductionist tendency of doctors to consider palliative care as symptom control. Whilst good symptom control is vital, other non-drug aspects of palliative care may be equally as important to the patient and their family. Anyone facing a life threatening illness will require supportive care in addition to specific treatment for their condition, along their illness journey. Elements of such care include:⁸

• Self help and education
• User involvement
• Information giving
• Psychological support
• Social support
• Rehabilitation
• Complementary therapies
• Spiritual support
• End of life and bereavement care

Living with cancer (or other life threatening illness)

From a patient's perspective, common issues include:

• Emotional adjustments - psychological issues surrounding diagnosis, impact of disease and treatment, effect on relationships, 'getting back to normal' after treatment, worries about recurrence etc. are very common. Help may include support groups, counselling, stress management and relaxation courses.
• Communication - patients and their families often find it difficult to talk openly about their feelings surrounding illness and may individually or collectively seek help or an outsider to listen. Particular difficulties may be experienced talking to children about illness.
• Symptoms and side-effects of disease/treatment - palliative care has traditionally concentrated on managing disease symptoms; it can also help patients cope with side-effects of treatment such as chemo- or radiotherapy.
• Sex and sexuality - sexual problems are common, often due to direct effects of the disease or its treatment, fatigue, anxiety or depression, altered body image and loss of self-esteem. Issues of fertility may also be important.
• Work⁹ - 100,000 people of working age are diagnosed with cancer in the UK every year. Many fail to get appropriate advice and support to help them remain or return to work.
• Dietary advice - loss of appetite, weight loss and the desire for good nutrition are all common.
• Travelling can become more complicated and patients may need help with practical matters such as assessing fitness to travel, advice on taking medications and seeking medical help abroad and problems obtaining travel insurance.
• Mortgages, pensions, loans and insurance - developing a life-threatening illness usually impacts on one's financial position and help may be required to navigate financial services, whether claiming on previously held insurance policies or covering outstanding mortgage or loan payments. Having had such an illness, obtaining cover in the future may also be more problematic.
• Financial support - money concerns can often become very pressing and help can come from government benefits or charitable grants.

Best practice in community palliative care

Guidance to improve community palliative care has come from a number of sources in the last few years including NICE⁷ and the Gold Standards Framework.¹⁰ Key messages include:

• Patients with palliative care needs are identified using common criteria and management plans instituted after discussion with the multidisciplinary team.
• Regular assessment of patients and carers using validated assessment tools.
• Anticipated needs should be planned for.
• Patient and carer needs are communicated within the team and to specialist colleagues, where appropriate.
• Preferred place of care and death are openly discussed and noted and measures made to facilitate individual's preferences where possible.
• There should be a named person within the primary care team to coordinate care.
• Relevant information should be available to out-of-hours carers and drugs that may be needed, should be left in the home.
• Care in the dying phase should follow a protocol, such as the Liverpool care pathway for the dying patient,¹¹ to ensure that no aspect is overlooked.
• Carers should be involved, educated and supported to care for their loved ones in the ways they choose. Information is critical - whether medical, financial or on bereavement support.
• Audit, reflective practice, developing practice protocols etc. is encouraged in order to promote individual and organizational development.

Good primary care is about caring for individuals from 'cradle to grave'. Providing good palliative care to individuals in the community can be one of the more demanding but ultimately satisfying parts of a GP's job. The multidisciplinary team can be large and, most often, the district nurses are the key players in orchestrating services around an individual's changing needs. In addition to the standard primary health care team, specialist community palliative care teams' input may be sought - services may include hospice at home, respite admissions, Macmillan nurse specialists, Marie Curie nursing and day centres. However, the 'team' may be even broader encompassing:

• Informal carers (family, friends, neighbours, volunteers)
• Privately provided nurses or carers assisting the family
• Voluntary organisations and patient groups (may be accessed via the internet or local centres, where available, providing information and support)
• Counsellors, therapists (art and music therapy are used widely in palliative care), psychologists and psychiatrists (some may specialise in palliative care e.g. psycho-oncologists)
• Dieticians, occupational and speech therapists
• Complementary therapists (e.g. massage, acupuncture)
• Religious and spiritual care workers
• Social workers and benefit advisers

Spiritual care¹²

When confronted with serious illness, spiritual needs become more important and patients and carers consistently attach more importance to spiritual well being than doctors.
Providing spiritual care in a secular society is challenging, particularly to doctors and nurses trained in a biomedical model, who may feel out of their depth when confronted by spiritual needs. Most health care professionals have received no training in spiritual care - we find it difficult because it requires us to shift from the problem-solving, solution-finding approach that we apply to the rest of our jobs.
Spirituality is difficult to define but relates to the need we all have to make sense of the world and our experience of it. The 'soul' or 'spirit' creates internal resources that can sustain, motivate and transform an individual's experience of life. A common misunderstanding is that spirituality and religion are synonymous. Religion is actually a belief system linked to rituals and practices that may help some people to better spiritual understanding. Spiritual needs common to all are the need for love and meaning.
Providing spiritual care means:

• Working with love and positive regard
• Encouraging and supporting the search for meaning
• Fostering hope
• Understanding loss and grief
• Allowing the expression of emotional and spiritual needs
• Involving chaplains and spiritual care workers
• Meeting our own spiritual needs

Kindness, compassion and deep listening are the core skills for providing spiritual care and are those most appreciated by patients and their families.

Self care¹³

Providing palliative care can be very demanding, particularly when it involves:¹⁴

• Complex needs
• Multiple visits
• Insufficient time or resources
• Challenging symptoms
• Lack of open communication about disease and prognosis

In order to provide good palliative care, we need to care for ourselves and our colleagues.
A study of some American primary care doctors showed that their main methods for sustaining well-being were:

• Time with friends and family
• Religious or spiritual activity
• Self care
• Finding meaning in work but also setting boundaries around it
• A positive-thinking outlook

It is also important to ensure that support is available within the practice team or from another professional when things are difficult. Deeper emotional insight into our practice can be fostered by personal development work, coaching, mentoring, Balint or other support groups.