Help people have a ‘good death’ at home

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As a care worker, you can make a real difference to the people you support at the end of their lives, and help them have a ‘good death’ at home.

The title of the recent report by the Leadership Alliance for the Care of Dying People sums it up well; we have One chance to get it right and certain things are necessary for that to happen.

How and where we die is a major worry for most of us. In 2013 Age UK published an End of Life Evidence Review quoting a Dying Matters opinion poll into people’s biggest fears. Dying in pain topped the list (83% of those surveyed), followed by dying alone (67%), being told they are dying (62%) and dying in hospital (59%).

You can help address those fears through how you communicate, the practical help you provide and the way you work with other health and care professionals.

Age UK points out that although most people say they want to die at home, viewing it as comfortable, familiar and peaceful place where they will be surrounded by family and friends and treated with dignity and respect, in reality the experience may be quite different.

Older people may live alone or with an elderly partner who acts as their carer but has their own health problems. Their property may not be suited to end of life care at home; it may be small, poorly maintained or heated, and require changes such as turning the living room into a bedroom.

In the latter stages of their life people may worry about being a burden on their family, the impact on loved ones of their dying at home, being increasingly dependent on others for intimate care and their home becoming a ‘mini hospital’ with lots of equipment and frequent visits from specialists.

Not being able to access the right services and medication to relieve pain and other symptoms is a worry. The most recent National Survey of Bereaved People (VOICES) found that, of the various settings where people died, pain was relieved least effectively at home.

Again, these are all issues that homecare workers can help to address.

Keep providing quality care

As Skills for Care points out, caring for people approaching the end of their life is likely to be the most challenging area of care work you will face – but it can also be the most rewarding. 

Traditionally end of life care has been viewed as a specialist area of work, but is really an extension of the high quality, person-centred care you should always aspire to deliver.

In its 2013 report The end of life care strategy: New ambitions the National Council for Palliative Care (NCPC) points out that: “Death has been over medicalised … part of the challenge now is to see death as a life event, not a medical one; which means we all need to change how we think and prepare for death.

“Care and support must be truly personalised and coordinated around the needs of the person and their family. The issue of choice and control – a fundamental tenet of personalised social care – is simply not working for some people at the end of life.”

Obviously you want to feel confident in dealing with someone’s final days, especially if this is the first time you have been in such a situation. There is specialist end of life training available, and e-learning in this area has been available free to all health and social care staff since 2010, as part of the national end of life care strategy.

To further help you develop appropriate knowledge and behaviours, Skills for Care and Skills for Health have drawn up core principles and underlying competences that are crucial to helping a person have a ‘good death’.  Perhaps the most important of these is communication – and that includes never talking down to, or over, someone who is dying, even if they appear to be unconscious.

Explain clearly, listen carefully

You need to make time to talk to people at the end of their lives on a regular basis – and be proactive, don’t wait for them, or their carers, to ask questions.  At the same time, you need to communicate in a sensitive and respectful way, and take into account what they want or feel able to discuss at any particular point in time. The right training and support will help you hold difficult conversations about withholding and withdrawing treatment, for instance.

One chance to get it right says: “Open and honest communication between staff and the person who is dying, and those identified as important to them, is critically important to good care.”

Speak or write clearly and plainly, and make sure the person understands what you mean. This may involve explaining about what is likely to happen during the dying process. If you can’t answer their questions, be prepared to seek further information or signpost them to someone who can.

It is important that the dying person and their carers know whether they’re actually being consulted about something, involved in making a decision or simply being informed. Make sure they are aware of options and resources available to them, and any potential risks or benefits.

Check what they want

A plan for end of life care and treatment is a must, ideally put in place as far in advance, and involving them, as much as possible.  It needs to be well documented so that consistent information about their needs and wishes is always available to the appropriate people involved in their care, at the right time.

Plans should pay particular attention to the person’s physical, emotional, psychological, spiritual, cultural and religious needs. They may contain advance statements of wishes (such as preferred place of death) and advance decisions to refuse treatment (such as instructions about resuscitation).

Any shift in someone’s condition, circumstances or wishes – and they have every right to change their mind – should be a trigger to review their care plan.

Focus on comfort

The end of someone’s life should be as comfortable as possible. The NCPC says: “If more people are to be cared for outside hospital, and to die in community settings, access to pain and symptom control at any time of day or night is essential.”

This does not mean medication should be given as a matter of course – it should be targeted at specific symptoms, be regularly reviewed and adjusted as required. And the reason for any medical intervention must be explained – ideally beforehand – to the dying person and the people important to them. They should also be told about likely side effects so they can make an informed decision – they may decide to refuse something that makes them sleepy, for instance, and affects the quality of their time with loved ones.

You should support a dying person to carry on as normal as much as possible, in accordance with their wishes. For instance, One chance to get it right advises that health and care staff should continue to offer, and help people with, food and drink, unless this goes against clinical advice.

There may already be assistive devices and equipment in the person’s home, but you need to consider what else might be particularly helpful during end of life care, such as oxygen supplies, hoists, commodes and beds with pressure relief mattresses. Think about how things are arranged – is there enough room around the bed for medical care (and a nearby electric socket) and visitors, for instance?

Coordinate services

In Dying well at home: the case for integrated working, the Social Care Institute for Excellence (SCIE) highlights the need for health and social care professionals to all work together and share their knowledge, with an emphasis on flexibility and responsiveness so that people who wish to die at home have rapid access to the most appropriate care and support at any time.

Part of your role can be ensuring that the person and their carers have useful contact information to hand – like local night nursing services and out-of-hours GPs – and being ready to seek expert advice when you are not in a position to help.  For instance, an occupational therapist will be able to assess the need for different equipment.

Keeping a note of what you do and say is always important, but particularly in end of life care, where your records – especially of conversations with an individual and their carer – are critical to continuity. You possibly know the person in your care far better, and talk to them more often and openly, than the specialists who may only really get involved towards the end, so you have a key role in sharing information about their condition, wishes and needs.

The Partnership for Excellence in Palliative Support in Bedfordshire is an example of how it can be done. It provides 24-hour support, with one single point of contact – a coordination centre hosted by Sue Ryder at St John’s Hospice – to provide a seamless service for patients, carers and care professionals across the county when they need expert advice and support, including out of hours, to enable people to be cared for at home in the last months of their life.

Support carers

‘Think family’, advises SCIE,  not just in involving them in decisions where appropriate, but ensuring they know how to get help, including advice on financial and other issues and an assessment of their own needs as carers.

A key message that emerged from the National Council for Palliative Care 2013 conference, Who Cares? Support for carers of people approaching the end of life, was that: “It is the responsibility of everyone who comes into contact with carers to do what they can to make sure the carer has the skills, resources and strength to care. Professionals should also establish how much a carer wants to take on, and what they don’t want to do, and build that into support plans.”

You may need to help resolve conflicts between the person and those close to them about the individual’s end of life choices, including what’s in their advance care plan. It may be necessary to bring in mediation or advocacy services in highly complex situations.

Above all, you should recognise and respond to the concerns, fears and anxieties of the person nearing the end of life and their family and friends. Be aware of the impact the person’s death will have on those closest to them – especially if they have been in a caring role for some time – and be prepared to offer appropriate advice, information and support during bereavement.

We are the champions

There are over 600 health and care staff, working across all settings, in the End of Life Care Facilitators and Social Care Champions Network. Together they support innovation, share good practice and build connections between different services and organisations. The aim is to promote integrated approaches and ensure everyone receives the best possible end of life care when they need it. Visit http://www2.hull.ac.uk/fass/eolc.aspx to find out how to join.

 

Vicky Burman

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