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


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 ... – PowerPoint PPT presentation

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

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

  • 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

The Project Aims to
  • Improve the quality of life for residents in LTC
  • Develop interprofessional palliative care
  • 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

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

  • 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

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

Perspective of FamiliesFamily Panel
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
  • What are families vision for change for
    palliative care that will address the social,
    physical, emotional and spiritual needs of the
  • What do families perceive the strengths and
    challenges of providing palliative care to be in
  • How do families want to be engaged in the
    palliative process?

Perspective of Families
  • Survey Results

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
  • Elm
  • Pine

Elm n22 Pine n 14
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
  • 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

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,
  • 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.

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.
  • Elm
  • Pine

Elm n8 Pine n 14
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

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

Perspective of Families
  • Interview and Focus Group Results

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

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.

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
  • What do you mean by palliative? Shes
    getting her medication, those arent taken away,
    shes eating, having to be fed.

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

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.

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.

Family Perspectives on How the Residents Current
Spiritual Needs Are Being Met
  • Challenges
  • Lack of opportunities to participate in religious
  • 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.

Families Perceptions of the Strengths of
Providing Palliative Care in LTC
  • LTC as the preferable location of death for the
  • Were just more relaxed, it just feels
    like home and the hospital is a different vibe.
  • Importance of having familiarity with staff and
  • 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 makes it a much more comfortable
    setting. PSWs have in general been incredible,
    theyve talked to me when I needed to be talked

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.

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
  • 3) Im new here or I dont usually work
    here so Im not sure.

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.

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
  • Well, after something happens to resident
    Im going to have something
  • here for the staff.

Families General Expectations of LTC
  • Understanding the expectations of everyone
    involved in the life of a resident residing in
  • 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.

  • 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.

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
  • Use of a social worker For my family own, to
    work through with somebodyworking through those
  • 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
  • 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.

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.

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
  • 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

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?

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.
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
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