Improving Care of the Elderly at the End of Life: Family Members Perspectives

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Improving Care of the Elderly at the End of Life
Family Members Perspectives

• Genevieve Thompson, RN PhD
• Post-Doctoral Fellow
• Manitoba Palliative Care Research Unit
• genevieve.thompson_at_cancercare.mb.ca

Source of funding
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Overview

• Background to the project
• Research study
• Strategies for improving end-of-life care
• Your thoughts

Photo www.hms.harvard.edu/cdi/pallcare/
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Significance of the Study

• Personal care homes (PCH) will be faced with
  providing quality end-of-life care to an
  escalating number of persons
• Family members are caregivers and recipients of
  care, who have their own unique perspectives on
  the care delivered
• Research evidence on the state of dying in PCHs
  is relatively sparse and current research on
  family satisfaction with end-of-life care is
  contradictory.

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How people die remains in the memories of those
who live on Dame Cecily Saunders
Photo www.hms.harvard.edu/cdi/pallcare/
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Research Questions

• What are family members perceptions of the
  quality of end-of-life care and their
  satisfaction with end-of-life care in the LTC
  setting?
• What are the associations between resident and
  family characteristics, systems characteristics,
  quality of care and family satisfaction with
  end-of-life care?
• What do family members identify as areas for
  improvement in the quality of end-of-life care
  provided in LTC facilities?

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Research Study Protocol
N38
N12
N404
N87
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Family Respondent (N14)

• Female (85.7)
• Mean age 56 years (45 to 68 years)
• Sons, daughters (and in-laws) (85.7)
• Visitation
• Daily (57.1),
• 2 to 5 times/week (28.6)
• Other (14.3)

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Resident
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Death Characteristics
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Focus Groups

• Structured around a series of 4 questions
• What in your mind is good dying or a good
  death?
• Thinking about your experience now, what were the
  positive experiences you had?
• What could the PCH have done better?
• What advice do you have to share on improving
  end-of-life care in the PCH?

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1. Palliative Care Philosophy

• Each facility needs to develop a philosophy of
  quality end-of-life care.
• Administration must support and encourage.
• If the top people dont care, then the rest of
  the staff doesnt

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2. Programs and Policies

• Includes
• Use of a checklist
• Mandatory training of all staff in end-of-life
  care
• Pain management
• How to communicate with families on what to
  expect when the resident is dying
• After death process

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Nursing homes have to have palliative programs in
place but you can have people with training and
no protocol and youre still sort of in the same
situation. You have people in the building who
know how to do things but theres no protocol to
move a person into it. So you need to establish
that nursing homes have to have a palliative
stream integral to their business with the full
expectation that people are going to die in your
building fully supported by a protocol.
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3. Develop Indicators

• PCH facilities need to have a clear understanding
  of what constitutes success in end-of-life care.
• Establish measures of palliative success.
• Protocols and standards need to become a
  condition of facility licensing or part of their
  accreditation.

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4. Improve Resources

• Information booklets and books.
• Access to pastoral care services.
• Designated room.

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5. Bereavement Follow-up

• Inconsistency across facilities.
• Those who received follow-up appreciated it.
• Reflects compassion on behalf of the facility.

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Psychosocial, Spiritual, Bereavement Support

• Feeling emotionally supported is a significant
  part of family satisfaction
• Few respondents reported receiving information on
  how they might feel after the death of the
  resident
• Bereavement support highly variable
• Follow-up contact highly valued by family members.

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Spiritual, Psychosocial Bereavement Support
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6. Exit Interviews

• Opportunities to provide feedback on facilitys
  performance valued.
• Either by phone or paper survey by an INDEPENDENT
  company.
• In the accreditation process, their voice
  included in an audit of the facility.

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7. Volunteers

• Bigger role for volunteers to play in PCH
  facilities.

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8. Improve Physician Continuity

• Improving communication between community
  physician and PCH physician.
• Alternative models of care.

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It seems as soon as you go through the nursing
home doors you become someone elses patient so
all of your past relationships go away and you
seem, youre just cut-off from all that and at
the time when its so critical to be able to rely
on those relationships and on the history that
you formed with these people. When you need it
the most its gone.
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Physician Contact
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9. Hospital Transfers

• Explore ways to eliminate non-emergent hospital
  transfers.
• Alternative models of care.
• Interventions able to provide in the facility.

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Theres one time when I look back on my moms
life, where she probably would have died at that
point had I not taken her into the hospital and
it would have been nice if someone would have
been there to coach me or tell me things or
explain things to me because with what happened
in the hospital at this point I never would have
taken hertelling me that the things my mother
was going through was actually that she was dying.
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Hospital Transfers Location of Death

• Rate of hospitalization in last month of life
  variable (40 to 58)
• Median length of time spent at other location 3
  days (minimum 12 hours)
• Death outside the PCH occurred in 13.7 of cases
• Possible reasons include care not meeting
  expectations and failure to achieve desired
  location of death.

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10. Clarity in ACP

• Confusion exists around the differences between a
  living will, advance directive, and an advance
  care plan.
• Transferability across documents.

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Advance Care Planning

• The presence of a proxy decision maker and the
  presence of an ACP significantly reduced the
  likelihood of transfer in last month of life
• Relationship between ACP and family satisfaction
  tenuous
• Presence of an ACP alone does not guarantee
  satisfaction
• Value of an ACP is for its social function and
  process.

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Consequences of Dissatisfaction

• Strong sense of regret, anger, frustration,
  sadness, unmet needs, and that they had let the
  resident down.
• Feeling that they needed to be there all the
  time to ensure that things got done.
• Wanting to distance themselves from the facility.

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• I had this sense, of not failure, but I didnt
  deliver what I promised her because we had this
  conversation about being pain free, and I
  promised her and theres the huge sense that I
  let her down and I hate that I think Ill always
  feel regret for what happened in that week.

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Moving Research into Practice