Older People Living with Cancer

Peer advocates supporting older people affected by cancer

Dying Well at Home: The case for integrated working

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The Social Care Institute for Excellence has  just published this new guide which contains a number of recommendations pertinent to our work as Advocates. OPAAL particularly welcomes the recommendation under co-ordinated care as  advocacy services often experience significant barriers to working more closely with their health colleagues when advocating for older people affected by cancer.

Coordinated care: health and social care and housing – Professionals and providers should:

Ensure that networks and coordination arrangements are in place to enable health and social care professionals (including those responsible for arranging and delivering the care) to work together and share their knowledge.

This guide is about enabling people who want to die at home to do so and improving the quality of care they receive. In the context of this guide, home‟ means the place where a person usually lives. This includes extra care‟, sheltered housing accommodation and tenancy-based accommodation such as supported living, but not care homes. The guide is aimed at practitioners and managers supporting people with end of life care needs across the health, social care and housing sectors.

While a good death‟ at home may not be a feasible or desirable death for everyone, it could be a reality for many more people if there are services to support it. There are likely to be significant resource savings if more people are kept out of hospital and are cared for at home. Successfully enabling people to die well in their own homes is a priceless achievement

In the practice examples section there is an interesting example from Macmillan Cancer Support’s Midhurst Macmillan Specialist Palliative Care Service.

This innovative, flexible and community-based care model is managed by the Sussex Community NHS Trust. It consists of a multidisciplinary team of specialist palliative care professionals, who link well with members of the primary healthcare team, community services, social services, care agencies and voluntary organisations in the locality, to provide proactive specialist palliative care and support following early referral from either the hospital or GP.

Care is undertaken either at home or in the community and may include blood/blood product transfusions, parenteral treatments, intravenous antibiotics, fluids and analgesia. The service accepts referrals for any person over 18 years of age who is living within a specified area with cancer or any life-limiting chronic progressive disease and who is experiencing complex problems.

The advantages of the model are that it extends choice at the end of life for people and their families, enables an early referral to active specialist palliative care and leads to good clinical outcomes such as less frequent Accident & Emergency attendances and decreased hospital stays. The majority of people cared for by this team will die in their preferred place, which is normally their own home.

An economic and qualitative evaluation of the service commissioned by Macmillan Cancer Support, which is still to be published, suggests that the service is cost-effective as well as offering maximum choice to people at the end of life.

The recommendations below will be relevant to the work of an independent advocacy service working with older people.

Choosing to die at home – Professionals and providers should:

  • Identify people who may be in their last year of life to ensure that they can access palliative care services when they need it.
  • Liaise with all those involved in the care of the person.
  • Support people at the end of life to choose their place of care and/or death
  • Provide information and support to carers.

Choosing to die at home – Commissioners should:

  • Encourage providers to have a protocol for identifying and meeting the need for end of life care at home.
  • Ensure, wherever possible, that people are enabled to die at home if they wish.
  • Characteristics such as age or condition should not automatically exclude people.
  • Ensure that providers have protocols in place for liaison between disease  specialists (often in hospital settings) and primary/community staff.

Dying a good death – Professionals and providers should:

  • Personalise end of life care and treat patients/service users and carers as experts in their needs and preferences.
  • Involve people approaching the end of life in how care is delivered so they can continue to take part in valued activities and relationships and to determine their own routine activities and priorities.
  • Treat patients/service users who are dying with dignity and respect, not talking down to or over them, even if they appear to be unconscious.
  • Involve same-sex partners and be sensitive to cultural preferences and priorities
  • Identify and respond to the spiritual and cultural needs that are important to the person and their carers
  • Give people at the end of life and carers as much information as they want about the dying process and the services available
  • Ensure that staff have had adequate training so that they can initiate conversations with people about their wishes and choices at the end of life.
  • Support those wishing to die at home to draw up an advance care plan, which specifies their wishes as the end of their life approaches. This should contain both advance statements of wishes (such as preferred place of care and of death) and any advance decisions to refuse treatment (such as instructions about resuscitation). A copy should stay with the person.

Coordinated care: health and social care and housing – Professionals and providers should:

  • Ensure that networks and coordination arrangements are in place to enable health and social care professionals (including those responsible for arranging and delivering the care) to work together and share their knowledge.
  • Ensure that patients/service users and carers see the same familiar staff where possible, and have a single nominated person to contact for advice who has influence across health and social care.
  • Ensure that professionals are able to work flexibly and are responsive to the needs of patients/service users and carers

A copy of the full report can be accessed here http://www.scie.org.uk/publications/guides/guide48/

A copy of the research evidence can be accessed here

http://www.scie.org.uk/publications/guides/guide48/files/guide48_researchevidence.pdf

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Author: kathparson

Chief Executive of Older People's Advocacy Alliance (UK)

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