Category Archives: End of life

This article was first published at HIV i-Base on 25 April 2018.

The revised BHIVA Standards of Care for people living with HIV are primarily produced as a reference for commissioning HIV services. It also describes a minimum standard of care that HIV positive people can use as a reference.

These 90-page guidelines were last updated in 2013 and this third edition was launched at the 4th Joint BHIVA/BASHH Conference in Edinburgh.

The Standards was produced by a writing group of more than 90 individual doctors, health workers and people living with HIV. It was a collaboration with numerous professional associations, commissioners and community groups.

The main changes to this edition include:

  • Reducing the number of standards from 12 to 8, but with each one covering broader themes.
  • A new section is included on person-centred care. This includes wider aspects of social circumstances, including stigma and discrimination, self-management, peer support and general well-being. The importance of these issues are emphasised by this being an early chapter.
  • Recognising the new U=U consensus: an undetectable viral load means HIV cannot be sexually transmitted – with or without a condom (although some sections of the document have inconsistent information on U=U that will hopefully be quickly updated).
  • The section on complex care has been broadened with more detail about access to specialist non-HIV treatment.
  • Another new section covers HIV across the life course covers HIV treatment and care from adolescence to end of life. This includes palliative care in the context that ART might continue to work well to the very end of life.

There are now eight chapters covering major themes. Each chapter and subsection includes quality statements and auditable targets.

Standard 1 covers testing, diagnosis and prevention and the 90:90:90 goals to eradicate HIV. All three areas are ways to maintain and develop combination prevention. This includes increased testing, early treatment, viral suppression and PrEP. Combination prevention helped bring about the dramatic reduction in HIV transmission seen recently in the UK. HIV positive people are important partners in combination prevention.

Standard 2 is about person-centred care. This has been described as “the fourth 90” and focusses on the whole person, not just HIV. BHIVA say it considers, “desires, values, family situations, social circumstances, and lifestyles. And in so doing, the needs and preferences of HIV positive people can be responded to in humane and holistic ways.” It challenges HIV stigma and discrimination and works towards equality in health and social care. Social inclusion and well-being – crucially aided by peer support – are key to person-centred care.

Standard 3 covers HIV outpatient care and treatment. Anyone newly diagnosed must be seen by a specialist HIV doctor within two weeks and given access to psychological and peer support. In some cases this referral needs to be within 24 hours. There is no gold standard for measuring engagement in care, but transfer of care should be seamless whether a person moves home, is incarcerated or simply moves to another clinic. Increasing numbers of children living with HIV from birth are now becoming adolescents. Management by interdisciplinary teams must ensure successful transition to adult HIV services. A qualified doctor must prescribe ARVs and monitoring according to current national guidelines.

Standard 4 is about complex HIV care. Inpatient care must ensure that an HIV specialist is included in the hospital multidisciplinary team. HIV positive people are living longer and often go into hospital for non-HIV related problems. They may be cared for safely and appropriately in a local ward or clinic. But they must also be supported by immediate and continued HIV expertise and advice. HIV positive people must have access to specialist services for other conditions such as cancer. But clear protocols and agreed pathways are essential for safe delivery of services. This section also includes supporting people with higher levels of need. It includes successful management of multiple long-term conditions, poor mental health, poor sexual health, and problems with alcohol or substance use.

Standard 5 is on sexual and reproductive health. It is important that HIV positive people are supported in maintaining healthy sexual lives for themselves and their partners. In addition, anyone at risk of other STIs and infectious hepatitis, perhaps through drug use, should be supported and given advice. Care should be given for contraception, fertility services, pregnancy planning, and access to abortion services. Care must ensure that babies are born healthy and HIV negative. Care for the mother’s health is key to giving birth to a healthy baby.

Standard 6 is on psychological care. HIV positive people should receive care and support that assesses, manages and promotes their emotional, mental and cognitive wellbeing and health. This should be sensitive to the unique aspects of living with HIV. HIV positive people have higher rates of depression, anxiety, addictions, self harm, and other mental health issues than the general population. Mental health needs must be screened on an annual basis. This includes screening for poor cognitive function that can cause memory problems and reduce ability to perform simple tasks.

Standard 7 covers HIV across the life course. This section looks at standards of care for everyone who is HIV positive. Management of ART should be individualised at every age. It starts with adolescents (aged 10 to 19 years) and young adults (aged 20 to 24 years). Education and personal development – as well as achieving healthy sex lives and relationships – should be supported by experienced sexual health advisers and specialist nurses.

The years from 25 to 65 are described as early to middle adulthood. Most people in this age group are diagnosed as adults. Care for early diagnosis and treatment should include peer support as well as psychological support. HIV positive people should be supported in having healthy and fulfilling sex lives and engaged in treatment as prevention (U=U).

The over 65s – whether newly diagnosed or long-time positive – should be given access to treatment for complex comorbidities. This is an area of significant emerging knowledge and will likely develop over the course of these standards. Successful care may be achieved through co-speciality clinics, mentoring schemes, or by identified experts in advice and guidance. Palliative care is now included here. 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 8 covers developing and maintaining excellent care. This standard covers knowledge and training to ensure specialist services are provided. It sets standards for monitoring, auditing, research and commissioning. It also sets standards for public health surveillance, confidentiality and information governance.

Roy Trevelion was a community representative on the Standards writing group.

COMMENT

These comprehensive Standards are very welcome.

The community was involved at every stage from planning to the final draft, with at least one community representative on each chapter and more than 15 UK-CAB members collaborating overall.

The result is a comprehensive benchmark for health and wellbeing for HIV positive people.

All sections provide bullet points for measurable and auditable outcomes and must be promoted in primary and secondary care, health & social care, public health, and local authority healthcare provision.

As bureaucratic and structural changes affect the structure of HIV services, these Standards should be a reference for ensuring that high-quality care for HIV positive people is maintained.

The inconsistent messaging over undetectable viral load and HIV transmission will hopefully be corrected. As the publication is only available in PDF format, this should be relatively easy. Several formatting problems, including difficult legibility (light font, justified text) would benefit from being revised. 

It is good to see the inclusion of HIV positive people in the photographs throughout the report, supported by the UK-CAB and Positively UK.

Reference

BHIVA. British HIV Association Standards of care for people living with HIV 2018. April 2018.
http://www.bhiva.org/standards-of-care-2018.aspx

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My 91-year-old mother was deeply unhappy at the geriatric hospital in which she found herself after breaking her ankle.

But we knew little of the alternatives. Official inspection ratings offer impersonal information. So how were we, her children, supposed to gauge the quality of other establishments offering care?

Our saviour turned out to be Alison – my mother’s hairdresser. As a specialist in older, housebound clients, she had continued to do her customers’ hair as they moved to various hospitals or care homes.

Alison gave us the names of three places nearby that our mother might prefer, and we arranged her transfer within 36 hours. It was a move which transformed the quality of her last few months of life.

Unlike formal inspectors, Alison was an unthreatening, secret observer of each of the institutions she visited. She proved to be a knowledgeable and reliable guide. Without her, my mother’s life could have ended very differently.

The trouble is, not every family is lucky enough to know an Alison.

In the UK, people are expected to make their own choices about their own care in the final months and years of life. But how can people become well informed about different care providers, especially when a crisis forces decisions to be made at short notice? Alison revealed the importance of informal contacts and social networks in allowing individuals and families to make good choices.

How could her role be made available to all families seeking similar information? Care settings for those nearing the end of life are, in terms of inspection, a bit like restaurants. Technical medical and nursing procedures, like a restaurant’s kitchen, need inspecting by technical inspectors. But most of the care provided at the end of a person’s life is not of the technical kind. It involves hard to measure factors like respect, a sense of belonging, and relationships with staff. It is in many ways like assessing a restaurant’s ambience. In the hospitality trade, this is something best considered by mystery customers who collectively author good food guides, or by informal online ratings like on TripAdvisor.

Such assessments rightly abandon the myth of objectivity embedded in formal inspections. Potential consumers perusing TripAdvisor ratings understand them as subjective experiences to be taken on balance.

So collective, honestly subjective, online ratings should be available for families to make informed choices about different care settings. For well-being over the course of life, we need to be able to read about customer experiences of health and care agencies just as much as we need to read about experiences of restaurants, hotels and holidays.

A great example of what is needed is carehome.co.uk, which gathers and publishes reviews of care homes, along with other information provided by the home. Many of the care homes listed, however, have no reviews. Care at home is reviewed by the online database homecare.co.uk, although the vast majority of organisations that look after people in their own homes have no reviews.

Those two websites are funded by industry subscriptions. Proposed reviews are authenticated and vetted before publication, and reviewers are advised not to publish complaints but send them direct to the agency. These safeguards should eradicate vexatious reviews, although they may also present an unrealistically positive overall view of user experience. The sites are, however, a step in the right direction.

Of course, TripAdvisor-style ratings for the “last journey” tend to come not from the actual service-user or patient. Most reviews are from family and friends, which could be an issue. Complex family dynamics – such as guilt at putting parents into care, or anxiety that care costs are eating up the inheritance – can mean families are rarely the baggage-free observers that Alison was.

Reviewing the situation

Of more concern is that even the most loving, attentive and observant family member may know little about the person’s experiences at the hands of their paid carers. This might only be achieved by CCTV cameras, but do we really want care homes, hospital wards and (in the case of home care) even the person’s own home to become zones of electronic surveillance?

No way of monitoring or collecting information will be perfect. And we should acknowledge that the trajectory of frail elderly dying is always uncertain. No one can predict how they will feel as bodies and minds fail, so all choices will entail a degree of guesswork.

Rigorous formal inspection – and public enquiries when things go dramatically wrong – are of course essential. But if people nearing the end of life (or their families) are to adopt the prescribed role of informed consumer, comprehensive collations of user experiences are vital.

End of life care is more important than booking a restaurant or the next holiday – so information needs to be just as good, or better.

Originally published by The Conversation

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