End of Life Care in Prisons The Patient Carer and Prisoner Perspective Bob Gibson Healthcare Governor, HMP Frankland HMPS Gill Scott Macmillan Prison Project Lead, County Durham and Darlington Foundation Trust

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End of Life Care in PrisonsThe Patient Carer and
Prisoner PerspectiveBob Gibson Healthcare
Governor, HMP FranklandHMPSGill Scott Macmillan
Prison Project Lead, County Durham and
Darlington Foundation Trust
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End of Life Care

• A suggested working definition for end of life
  care is
• care that helps all those with advance,
  progressive, incurable illness to live as well as
  possible until they die. It enables the
  supportive and palliative care needs of both
  patient and family to be identified and met
  throughout the last phase of life and into
  bereavement. It includes management of pain and
  other symptoms and provision of psychological,
  social, spiritual and practical support.
• (Department of Health, 2008)

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End of Life Care Strategy (2008)

• 500,000 people die in England every year
• Large majority of deaths follow a period of
  chronic illness such as heart disease, cancer,
  stroke, chronic respiratory disease, neurological
  disease or dementia.
• 58 occur in NHS hospitals
• 18 occur at home
• 17 in care home
• 4 hospices
• 200 people died in custody in England and Wales
  in 2010/11with 122 (61) deaths from natural
  causes

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Natural Deaths in Prison
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Expected Deaths in Prison

• More deaths from terminal illness can be expected
  as the prison population continues to age.
  (Ombudsman,2011) ( Turner, 2011)
• people in prison should be treated with dignity
  and respect and given as much choice as is
  possible about the care they receive as they
  approach the end of their lives (End of Life
  Care Strategy, 2008)

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Expected Death in Prison

• Carers and family members of a person who is
  approaching the end of life have a vital role in
  enabling that person to die in the place of their
  choice. They also have their own needs. Many
  carers willingly take on the role of looking
  after someone close to them who is nearing the
  end of life. However, the physical,
  psychological, social, financial and spiritual
  consequences of doing so need to be taken into
  account.
• My friend Eddie

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North East Macmillan Palliative Care Project

• 2 year project funded by Macmillan and North East
  Offender Commissioning Unit
• Working with 7 North East Prisons
• Developed Macmillan Adopted Prison Standards 28
  MAPS
• Patient
  pathway
• Early Identification of Patients
  End of Life Care
• Views of patients and prisoners

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Patient and Prisoner Involvement HMP Frankland

• HMP Frankland, High Security Adult Male Prison,
  Population 800
• Single Patient Interview
• Group work with Prisoner Consultative Committee
• Group work with Prisoner Health Trainers

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Patient and Prisoner Involvement HMP Frankland

• Feedback from 4 working groups
• Questionnaires to 8 residential wings focusing
  living with a life limiting illness and dying in
  prison
• 32 Questionnaires returned

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Questions Included

• Current understanding of services available
• What type of information would you find useful?
• Concerns and issues living with a palliative
  condition while in prison
• Concerns and issues receiving end of life care
  and dying in prison
• Do you think it is important to have the
  opportunity to discuss and plan your care in
  advance?
• Concerns or questions regarding fellow inmates
  with palliative needs remaining on the
  residential wing
• Who should be involved in your care?

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Themes

• Little understanding of services available
• I would not know what to expect or ask for
• It is good to know that there are people
  who can help, because once someone
• who is dying goes from the wing you dont
  really know what happens
• Requests for information and resources
• Being able to provide a booklet of frequently
  asked questions
• DVD or video to answer questions
• My friend has filled this questionnaire in for
  me because I cant read of write

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Themes

• Equitable access to quality care
• I would hope to be treated with respect
  compassion and dignity
• I would be worried I did not receive the
  same treatment as in the community
• Concerns about family and contact with family
• Would I get increased access to my family?
• Is anyone available to support my
  children?
• I would want my family to be updated and
  have honest information
• Who would break the news that I had died
  to my family?

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Themes

• Little understanding about choices at end of life
  Al Megrahi
• Do we get released when we only have three months
  left to live ?
• Where would I be moved hospital wing or stay
  here?
• Would I be allowed to stay in my cell, with staff
  and people I know?
• I think it is important to discuss what my wishes
  are before I am unwell, and not to be
  resuscitated.
• Concerns about timely pain and symptom control
• I would be worried that there would be no quick
  response to the panic bell.
• Would I get pain control on time or be left to
  suffer unnecessarily?

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Themes

• Requests for support for spiritual, mental
  health, completing life tasks
• I would be concerned I would die without a
  spiritual advisor
• I would like to be able to go home to be with my
  mam and not die in prison
• Concerns about what happens after death
• Who would break the news that I had died to my
  family?
• What happens to my body when I die?
• What would happen to pets?

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Themes

• Support towards fellow prisoners nearing end of
  life, remaining on the wing
• Being with staff and inmates who know him may be
  able to make his last days more bearable. Also
  to give him practical and emotional support.
• As a human being I would not have any worries
  about supporting someone, I would offer my
  support and shoulder no matter who that person
  was.
• I would question whether the wing was the right
  place for someone near the end of their life,
  lack of medical facilities, resuscitation,
  hygiene ect.

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Themes

• People who should be involved in my care
• Nurses from healthcare, social worker,
  experts in the field of condition
• A named nurse I can contact
• Other inmates if we want that
• Doctors consultants
• Faith minister, pastoral
• Personal Officer
• Physiologists
• Samaritans
• Outside Doctors and Nurses
• Specialist and Macmillan Nurses
• Mental Health staff

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Outcome of Consultation

• Developed Patient information DVD
• Prisoner and patients families
• Education to prison officers and prison nurses
• NHS staff outside of prison
• Patient information leaflet
• My friend Eddie - Considering approach to needs
  of prisoner carers

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References

• Department of Health(2008) End of Life Care
  Strategy-promoting high quality care for all
  adults at the end of life
• Prison and Probation Ombudsman for England and
  Wales (2011) Annual Report 2010-2011
• Turner.M.Payne S Barbarachild Z (2011) Care or
  Custody? An evaluation of palliative care in
  prisons in North West England. Palliative
  Medicine 254, pg370-370
• Fuller A, (2011) No bars to care. Inside
  Palliative Care 18pg13-14

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Further information

• Gill Scott g.scott3_at_nhs.net
• Bob Gibson bob.gibson_at_hmps.gsi.gov.uk