Family Palliative/End-of-Life Care in Long-Term Care Homes

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Family Palliative/End-of-Life Care in Long-Term
Care Homes
Presented By Dr. Jo Ann Vis, School of Social
Work, Lakehead University Lise Arseneau, MA
(Sociology), CERAH, Lakehead University Alesha
Gaudet, MSW, CERAH, Lakehead University Panelists
Margie Hull Heather Kibzey Bob Stewart
November 4, 2010
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Conflict Disclosure Information Presenter Jo
Ann Vis, Alesha Gaudet, Lise Arseneau Title of
Presentation Family Palliative/End-of-Life Care
in Long-Term Care Homes I have no financial or
personal relationships to disclose
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Research Issue

• By the year 2020, it is estimated that as many
  as 39 of
• LTC residents will die each year in a LTC
  home
• These people represent one
• of societys most frail and
• marginalized populations who
• often struggle with managing
• multiple chronic conditions and
• social isolation

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Background

• Palliative care is a philosophy and a unique set
  of interventions that aim to enhance quality
  of life at the end of life in order to provide a
  good death for people, and their family, when
  death is inevitable
• Quality of life at the end of life is understood
  to be multidimensional and to consist of
  physical, psychological, social, spiritual and
  financial domains
• Most long-term care homes do not have a
  formalized palliative care program that address
  these needs

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The Project Aims to

• Improve the quality of life for residents in LTC
• Develop interprofessional palliative care
  programs
• Create partnerships between LTC homes, community
  organizations and researchers
• Create a toolkit for developing palliative care
  in LTC Homes that can be shared nationally
• Promote the role of the Personal Support Worker
  in palliative care

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Research Study Partnerships

• Quality Palliative Care in Long-Term Care
  Alliance (QPC-LTC)
• Five year project
• Involves 4 LTC homes in Ontario
• Hogarth Riverview Manor Bethammi Nursing Home,
  St. Josephs Care Group, Thunder Bay
• Allendale Long Term Care Home, Milton and
• Creek Way Village, Burlington
• Includes 36 organizational partners and 27
  researchers nationally and internationally

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Methodology

• Comparative Case studies in each of the LTC Homes
• Participatory Action Research Methods Surveys,
  Interviews, Focus Groups, Participant
  Observations, Document Reviews
• Sample Population Residents, Family members,
  Physicians, PSWs, RNs, RPNs, Support Services (ie
  Spiritual Care, Dietary, Housekeeping,
  Maintenance etc.), Administration, and Community
  Partners

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Presentation Format

• Listen to the stories of three family members
• Present results from Environmental Scan
• Qualitative and Quantitative Results
• Discuss as a group

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Perspective of FamiliesFamily Panel
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Perspective of Families Panel Discussion

• What impacts family members own quality of life
  when caring for someone in LTC?
• What does palliative care in LTC mean to
  families?
• What are families vision for change for
  palliative care that will address the social,
  physical, emotional and spiritual needs of the
  residents?
• What do families perceive the strengths and
  challenges of providing palliative care to be in
  LTC?
• How do families want to be engaged in the
  palliative process?

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Perspective of Families

• Survey Results

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Quality of Life in Life Threatening Illness
Family Caregiver Version (Cohen, et,al
survey, 2006)
Dimension Example
Environment I had the privacy I wanted
Patient State The condition of _____ was distressing to me
Carers Own State I had time to take care of myself
Carers Outlook I was comforted by my outlook on life, faith, or spirituality
Quality of Care I agreed with the way decisions were made for ____
Relationships I felt my relationship with the people most important to me made my quality of life much better
Financial Worries My financial situation has been stressful
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Results

• Elm
• Pine

Elm n22 Pine n 14
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What do You Most Want the Care Team to Know?

• Strengths
• The LTC home was doing the best job they could
  despite staffing and resource
  challenges/limitations
• Residents are well cared for
• Activities provided are good (eg. pet therapy)
• LTC staff know the family members
• It takes a certain kind of person in LTC and
  there are many staff who are there for the right
  reason

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What do You Most Want the Care Team to Know?

• Challenges
• Family members empathized with the constraints
  the LTC homes were working within (short staffed,
  under-resourced).
• Turnover and shortages in staff can create
  inconsistency of care.
• Communication between staff and family members
  needs improvement.
• There was some concern for resident safety,
  inactivity and isolation.

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Family Perceptions of Care


(Vohra,et al. - survey 2004)
Subscale Definition Example
Resident Care Family members opinions of care provided to the resident. The staff treated my family member with dignity.
Family Support Refers to care provided by the LTC facility that is directed towards family members to assist them with decision making, and to provide education, emotional, and spiritual support. The staff informed me about care options during my family members last days.
Communication Concerning the timelines, comprehensiveness, and clarity of the communication between staff and the family member. The staff kept me informed about my family members health.
Rooming Family members perception of appropriated placement of the resident in the facility, and privacy. My impact on what happens in my department is large.
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Results

• Elm
• Pine

Elm n8 Pine n 14
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Factors That are Important to End-of- Life Care

• Strengths
• Felt the home and staff did a good job in taking
  care of their
• family member
• Staff treated residents with respect and dignity
  
• Resident received excellent pain management

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Factors that are Important to End-of- Life Care

• Challenges
• Shortage of staff negatively influence the care
  of their family
• member
• Families expressed stress related to visitor
  restrictions for infection control purposes
• Unsatisfied with the physician involvement and
  wanted better
• communication
• There should be information on what to expect
  when a person dies
• available to families
• Increased communication between staff and
  families

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Perspective of Families

• Interview and Focus Group Results

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Impact on Family Members Quality-of-Life

• Experiencing feelings of stress, guilt,
  intimidation or feelings of being trivialized
• Sometimes I felt trivialized like what I was
  saying was really not the way
• things were.
• Experiencing grief
• I think you have to recognize were all
  grieving, were grieving the loss of
• our parents right now.
• Minimizing the need for self-care
• For family members particularly those of us
  who are here every day or
• frequently and have all the issues to deal
  with that there is so much
• coming at you that its really easy to sort
  of minimize your own needs and
• put that family member first because youve
  got all these feelings about
• guilt and all that other stuff going on in
  there.

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The Meaning of Palliative Care for Families

• At the time of the interview the majority of
  families did not perceive their family member to
  be receiving palliative care and a few family
  members had no prior understanding.
• Trying to distinguish any differences between
  palliative and day-to-day careit is sometimes
  understood as being a continuum of care
• It seems like everyone in a nursing home is
  in palliative care, so to speak, under the
  umbrella of were not going home , so I am
  trying to distinguish in my mind what the
  difference would be.
• An assumption that hospitals offer more
  end-of-life care
• the hospital, there would be maybe just a
  little bit more care and attention.

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The Meaning of Palliative Care for Families

• Different kinds of palliative care
• Theres different kinds of palliative care
  theres end-of-life where theyre actively dying
  and then theres palliative care when they come
  in for pain management.
• Providing specialized care (knowledgeable staff
  compassionate care)
• Well, this is the last stop on the road of
  their life and if they dont have that kind of
  care, theyre just housing her.
• A process of preparing for death (end-of-life
  care actively dying spiritual physical
  preparation)
• What do you mean by palliative? Shes
  getting her medication, those arent taken away,
  shes eating, having to be fed.

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Family Perspective of How the Residents Current
Physical Needs Are Being Met

• Strengths
• Having pain control
• When hes in pain he makes this face, so I know
  when hes uncomfortablea lot of the girls or
  most of the staff now recognize it.

• Challenges
• Experiencing health specific problems
• She cant see very well, she cant hear
  very well, and she cant eatits a struggle to
  communicate.

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Family Perspectives on How the Residents Current
Psychological Needs Are Being Met

• Strengths
• Awareness of the presence of others
• Shes not dead yetI think even though they
  may not know that youre there I believe they can
  still sense it

• Challenges
• Exhibiting aggressive behaviors
• I understand that my mother is at a stage where
  whatever her stage is but when shes aggravated
  or upset its such a big difference. She can
  still be confused but she doesnt have to be
  aggravated or upset.

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Family Perspectives on How the Residents Current
Social Needs Are Being Met

• Strengths
• Enabling communication
• If they talk to her like they would do a five
  year old or a three year old and keep it basic
  and just look directly at her, she knows what you
  are saying.

• Challenges
• Disabling communication
• Shes not talking much but the last time I
  addressed that she said, Nobody talks to me.

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Family Perspectives on How the Residents Current
Spiritual Needs Are Being Met

• Challenges
• Lack of opportunities to participate in religious
  activities
• I would like to see spiritual care a bigger
  component in terms of what is happening here.

• Strengths
• Participating in religious activities
• Spiritual needs, well shes always had that, so
  I think thats deep-rooted.

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Families Perceptions of the Strengths of
Providing Palliative Care in LTC

• LTC as the preferable location of death for the
  resident
• Were just more relaxed, it just feels
  like home and the hospital is a different vibe.
• Importance of having familiarity with staff and
  surroundings
• The people who started looking after her are
  still here looking after her and even she
  recognizes the faces, she hears the voices even
  if she wouldnt see she would still know you, the
  smells, the odors, the noises are all something
  that are familiar to her.
• LTCs experience in providing palliative care
• I think the people that are involved in
  palliative care are people that know how to
  handle it.it makes it a much more comfortable
  setting. PSWs have in general been incredible,
  theyve talked to me when I needed to be talked
  to.

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Families Perceptions of the Challenges of
Providing Palliative Care in LTC

• Perceiving staff as having a lack of palliative
  care knowledge
• 1)A lot of people arent comfortable with
  death and the staff has changed
• so much here, theres a lot of new
  staff that have not seen death, they
• dont know the signs.
• 2)A lot of staff I find dont understand
  the diseases of residents.
• Insensitive communication
• I went into her room one day and there was
  a thing on her thing by the bed saying that she
  was on palliative care, nobody conveyed to us why
  all of a sudden they felt she had to be on
  palliative care.

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Families Perceptions of the Challenges of
Providing Palliative Care in LTC

• Unprofessional conversations
• 1) I feel like here that there isnt the
  communication that there
• should be...I said, "the nurse said that
  my dad needs to have blah,
• blah, blah, and she PSW said, Well,
  tell the nurse to do it
• then.
• 2) We dont have time for that The
  doctor said it has to get
• done. And who is he, hes not our
  boss.
• 3) Im new here or I dont usually work
  here so Im not sure.

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Families Perceptions of the Challenges of
Providing Palliative Care in LTC

• Families require more information about
  palliative care
• But half of the stuff, I just dont
  understand myself. So, like its not in
• language that I would understand and I get
  more out of talking to
• somebody than reading it.
• Insensitive time frame for retrieving residents
  belongings after death has
• occurred
• They give you so many hours to get
  everything out Yeah, it was
• rushed, it was like she died that night and
  the next morning they had
• somebody coming in already and youre busy
  doing other things like
• arranging stuff.

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Returning to Families Perceptions of the
Strengths of Providing Palliative Care in LTC

• Personal caring touches
• I can honestly say that once we got the
  process going, the staff are
• really terrific, like they came and turned
  her every 2 hours, they
• suctioned her regularly, had IV going for
  her, they did all kinds of extra
• things for her, other staff that were
  working on other units that knew her
• were coming over on their coffee break to
  visit her which I thought was
• wonderful, it really touched my heart that
  they would do that.
• Need for closure with staff after the death of a
  resident
• Well, after something happens to resident
  Im going to have something
• here for the staff.

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Families General Expectations of LTC

• Understanding the expectations of everyone
  involved in the life of a resident residing in
  LTC
• I think thats really important that when
  families come in that they understand what the
  institutions expectations are for themselves and
  of the family, the reasons why and at the same
  token expectations of the family are presented at
  that time. Because it is not going to ever be the
  same. The institution can only do so much, if you
  want to raise those expectations up higher then
  the family has to be involved and you know, say
  that, it takes a lot out of the family.

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• Families Expectations of LTC

• Palliative care should be embedded in the policy
  and procedures of LTC That care at end-of-life
  should be automatic, that should be part of the
  expectations of the institution.
• Clear communication I dont want a call shes
  already dead.
• Accessible staff A lot of time when I come up
  theres not a soul.
• Openness around death 1) Sometimes a person is
  alive today and gone tomorrow and its a secret,
  deaths a secret. 2)Its like it happens and
  theyre spirited away.

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Families Expectations of LTC

• Consistent staff You shouldnt be switching
  staff around and having people come in that
  arent used to dealing with the dying and
  family.
• Use of a social worker For my family own, to
  work through with somebodyworking through those
  steps.
• Utilize volunteers be conscientious to
  introduce the volunteer to family I think there
  needs to be a better sharing of volunteers within
  that system hospital 400 volunteers because
  there are people here who do not have any
  family.
• Have available education sessions for families I
  think education sessions would be really useful
  toofind ways to make people feel more
  comfortable with whats happeningbecause fear is
  the biggest part of all of this.

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Families Expectations of family members

• An advocacy role family know the likes and
  dislikes of the resident
• Inclusion of the resident in decision making
  Resident needs to be part of
• that decision.
• Maintain interactions with the resident An
  important role, familiarity and
• just knowing that they resident havent
  been abandoned by the family.
• A palliative care team to include a
  representative from family and resident councils
• Families helping families I find that the
  people I have connected with other
• than residents, the family members have been
  very helpful, lots of people
• have given me good ideas about well, check
  into this or ask about that.
• The role of family members includes supporting
  staff Family members are
• supposed to be there to support the workers
  working with LTC to do
• what needs to be done, to work together to
  provide whatever she needs.

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Comments and Questions

• What are some ways in which staff can help
  alleviate the stress families experience in 1)
  providing care and 2) in approaching staff with
  concerns?
• Palliative care encompasses the physical,
  psychological, social, and spiritual domains, can
  you provide ways in which LTC can best meet these
  needs for the residents?
• Data shows that many families are not processing
  the information given to them on admitting day,
  how can information be shared that ensures
  understanding?

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Important Considerations

• Family needs are complex at the end of life
• Education for families on advance care planning
  and the role of palliative care in LTC is needed
• LTC staff need to learn how to communicate to
  families about palliative care issues
• Palliative Care teams should include the family
  and resident.
• Palliative Care extends into bereavement, how can
  LTC homes meet those family members needs?

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References
Cohen, R., Kuhl, D., Ritvo, P. (2006).
QOLLTI-F Measuring family carer quality of life.
Palliative Medicine, 20, 755-767. Vohra, J.U.,
Brazil, K., Hanna, S., Abelson, J. (2004).
Family perceptions of end of life care in
long-term care facilities. Journal of Palliative
Care, 20(4), 297-302.
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Acknowledgement
Funding Provided By Social Sciences and
Humanities Council of Canada
Special thanks to Bethammi Nursing Home and
Hogarth Riverview Manor, St. Josephs Care Group,
Thunder Bay, ON