BHIVA Standards of Care for People Living with HIV

7. HIV across the life course

7d. Palliative care

Palliative care is a core component of any health service, ensuring that we optimise quality of life and relieve distress in the face of serious, advanced illness. There is never ‘nothing we can do’ – palliative care ensures that the individual and their family are supported, receive appropriate care that meets their needs and preferences, and do not experience unnecessary suffering.

Standard 7 - HIV across the life course

In the UK, mortality is significantly higher among people living with HIV compared to the general population for all causes. Survival is worse for people living with HIV diagnosed with cancer; non-AIDS cancer is now the leading non-AIDS cause of death among people living with HIV, and survival is worse after myocardial infarction compared to people not living with HIV. Despite this ongoing need to ensure that the focus on high-quality care for people living with HIV continues to the end of life, it has received relatively little attention since the availability of ART. However, ageing with HIV and the increase in serious comorbidity requires us to ensure that good-quality care continues throughout the life course.

Palliative care is defined as ‘an approach that improves the quality of life of patients 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’ [150]. Palliative care seeks to relieve distress for the patient, and for those around them. It can be delivered alongside potentially curative treatment, and should be initiated as early as possible for people who have life-threatening disease.

Recognising the ‘end of life’ is difficult and is usually understood to be the last 12 months of life. Palliative care teams may provide specialist palliative care for those with complex pain or other symptoms or for management of complex conversations and decision-making. Generalist palliative care should be provided by all healthcare professionals.

Palliative care is highly effective at managing problems such as pain and other symptoms. Early palliative care (i.e. not just at the very end of life) can improve patient well-being, and save costs for the health system (as it prevents people being admitted to hospital unnecessarily, and enables people to be cared for and to die at home should they wish) – it also can help people to live longer by helping them to choose not to have distressing treatments that may not add to the quality of their life.

Access to palliative care is a human right. People with life-threatening illness should expect to have access to palliative care to relieve unnecessary distress. For people living with HIV who are facing the end of their lives, access to good palliative care is crucial to help them plan the care they want. Although access to ART has greatly increased life expectancy for people living with HIV, it is essential that we continue to provide the skills of palliative care to those who may face life-threatening illnesses such as cancer, heart and kidney failure, those whose HIV is not responding to treatment, or for those ageing with HIV who need good end-of-life care. Although most people would choose to know about their poor prognosis and to die at home, people living with HIV are more likely to die in hospital than people dying from other conditions such as cancer. This reflects a number of barriers to palliative care for people living with HIV that must be overcome.

HIV treatment has improved so much that the focus has shifted away from end of life care. This standard is crucial to guide professionals and patients when the focus changes. Sarah Cox, Consultant and Lead Physician in Palliative Care Chelsea and Westminster NHS Foundation Trust

Good person-centred care should take a ‘whole-person’ approach, which includes an understanding of sexuality and culture. Gay and bisexual men are disproportionately affected by HIV, and their end-of-life care should be in line with their preferences for involvement of family and others, using appropriate language, and specialist palliative care services should follow existing recommendations to provide MSM with appropriate care. Good palliative care may also improve the bereavement outcomes of their significant others. For patients of African heritage, cultural differences in the acceptance and the patient’s interpretation of pain should be taken into account to avoid under-treatment. In addition, people with comorbid substance use may have specific and complex social care needs that would benefit from the detailed social history taking and care planning that is the hallmark of palliative care. However, evidence suggests that people living with HIV who use drugs have historically had poorer access to palliative care.

Given the additional aspects of stigma and confidentiality for people living with HIV, information sharing should be conducted carefully and in line with patient preferences. As palliative care aims to support families and other important people in the patient’s life, information sharing should be directed by the patient.

Although other standards in this document are relevant to palliative care (e.g. psychological support), palliative care cannot be achieved unless a whole-person approach with multidimensional assessment and care (i.e. physical, psychological, social and spiritual) is conducted. This multidimensional approach with careful attention to pain and symptom control differentiates palliative from supportive care. Given the high prevalence and burden of pain (including neuropathic pain) and other symptoms among people living with HIV who are accessing treatment, the detailed assessment and management of these problems should be stressed. Person-centred outcome measures such as the Palliative Care Outcome Scale (iPOS) are routinely used across the UK to inform assessment and monitoring or patients’ and families’ symptoms and concerns. In primary care it is currently more common to use the Gold Standards Framework (www.goldstandardsframework.org.uk) or the Royal College of General Practitioners Palliative Care and End of Life Toolkit (www.rcgp.org.uk/clinical-and-research/resources/toolkits/palliative-and-end-of-life-care-toolkit.aspx).

Now is the time to look forward and plan how to die well. It should not only be with dignity and respect, but with self-knowledge too. Roy Trevelion, HIV i-Base

The Mental Capacity Act 2005, in England and Wales allows people to express their preferences for care and treatment, and to appoint a trusted person to make a decision on their behalf should they lack capacity in the future (see references for further information on incapacity and mental capacity). In Scotland, the Adults with Incapacity Act (Scotland) 2000 (www2.gov.scot/Publications/2008/03/25120154/1) and the Mental Health Act (Scotland) 2015 (www.gov.scot/Topics/Health/Services/Mental-Health/Law/2015Act-provisions) should be followed. In Northern Ireland, the Mental Capacity Act 2016 (Northern Ireland) applies (www.legislation.gov.uk/nia/2016/18/contents/enacted).

Communication

Information should be shared in a manner and at a pace in line with patient preference.
Communication should be recognised as an ongoing process as needs, preferences and priorities change.
The specific information that has been shared should be recorded to ensure the whole team understand patient insight.
Clarity should be sought from the patient on confidentiality and sharing of information.

Timeliness

Clinical uncertainty should be recognised (i.e. treatment, prognosis or recovery are complex or unpredictable).
Palliative care should be included as part of whole-patient management from the point of diagnosis of a life-limiting condition.

Management

All clinical staff should be able to provide basic assessment and delivery with respect to palliative care.
Ongoing, holistic, person-centred assessment care planning is required.
Relationships should exist between HIV teams and specialist palliative care teams who can manage apparently refractory problems.
Complex pain cases should be referred to a pain clinic.
Assessment and monitoring of person-centred outcomes should underpin routine practice.
Pain and symptom control should be at the heart of care plans and delivery.
Palliative rehabilitation should be provided to optimise engagement, function and performance.
Care should address the symptoms and concerns of both the patient and their significant others.

Planning

Practice will require plans to be in place for exacerbations, palliative care emergencies and when an unplanned admission is a potential risk against individual wishes.
Teams should establish preferences for end of life and should offer advance care plans and advance directives, which should be reviewed and be readily available to all team members.
There should be regular revisiting of wishes as this will be required as disease progresses.
Clarity and documentation in the medical record is needed on who should be involved in care planning and provision in the case of reduced capacity.
Discussion and information about death and dying should be offered at appropriate times at a pace that is in line with patient preference.
Death certification should follow GMC guidance which states that HIV (as a serious communicable disease) must be disclosed on the death certificate if it contributed to the death (www.gmc-uk.org/guidance/ethical_guidance/30625.asp).

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