Transcript Lorem ipsum dolores

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-ofLife 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 home
 These people represent one
of society’s most frail and
marginalized populations who
often struggle with managing
multiple chronic conditions and
social isolation
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
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
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. Joseph’s 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
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
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 Families
Family 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 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?
Perspective of Families
Survey Results
Quality of Life in Life Threatening
Illness: Family Caregiver Version
(Cohen, et,al – survey, 2006)
Dimension
Environment
Patient State
Carer’s Own State
Example
“I had the privacy I wanted”
“The condition of _____ was distressing to me”
“I had time to take care of myself”
Carer’s 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
Financial Worries
“I felt my relationship with the people most important to me
made my quality of life much better”
“My financial situation has been stressful”
Results
Average for each Dimension
• Elm
• Pine
10
9
8.69 8.83
8.45
7.82
8
Negative - Positive
9.12
8.09
7.41 7.39
7
6.5
6.71
6
6.64
5.5
5.07
4.64
5
4
3
2
1
0
Environment
Quality of Care
Carer's Outlook
Carer's Own State
Dimension
Relationships
Financial Worries
Patient State
Elm; n=22
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 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
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.
Family Perceptions of Care
(Vohra,et al. - survey 2004)
Subscale
Resident Care
Family Support
Communication
Rooming
Definition
Family members’ opinions of care
provided to the resident.
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.
Concerning the timelines,
comprehensiveness, and clarity of
the communication between staff and
the family member.
Family members’ perception of
appropriated placement of the
resident in the facility, and privacy.
Example
“The staff treated my family
member with dignity”.
“The staff informed me
about care options during
my family member’s last
days”.
“The staff kept me informed
about my family member’s
health”.
‘My impact on what happens
in my department is large.’
Results
• Elm
• Pine
Average for each Dimension
7
Strongly Disagree - Strongly Agree
6.25
6
5.75
5.56
5.8
5.42
5.49
5.27
5.31
5
4
3
2
1
Rooming
Communication
Resident Care
Dimension
Family Support
Elm; n=8
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 families
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 we’re all grieving, we’re 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 it’s really easy to sort of minimize your own needs and
put that family member first because you’ve got all these feelings about
guilt and all that other stuff going on in there.”
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 care…it
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 ‘we’re 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
“There’s different kinds of palliative care: there’s end-of-life
where they’re actively dying and then there’s 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 don’t
have that kind of care, they’re just housing her.”
 A process of preparing for death (end-of-life care; actively dying;
spiritual & physical preparation)
“What do you mean by palliative? She’s getting her medication,
those aren’t taken away, she’s eating, having to be fed.”
Family Perspective of How the Resident’s
Current Physical Needs Are Being Met
Strengths

Having pain control
“When he’s in pain he
makes this face, so I know
when he’s uncomfortable…a
lot of the girls or most of the
staff now recognize it.”
Challenges

Experiencing health specific
problems
“She can’t see very well, she
can’t hear very well, and she
can’t eat…it’s a struggle to
communicate.”
Family Perspectives on How the Resident’s
Current Psychological Needs Are Being Met
Strengths

Awareness of the presence of
others
“She’s not dead yet…I think
even though they may not
know that you’re 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 she’s
aggravated or upset it’s such
a big difference. She can still
be confused but she doesn’t
have to be aggravated or
upset.”
Family Perspectives on How the Resident’s
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
“She’s not talking much but
the last time I addressed
that she said, “Nobody
talks to me.”
Family Perspectives on How the Resident’s
Current Spiritual Needs Are Being Met
Strengths

Participating in religious
activities
“Spiritual needs, well
she’s always had that, so I
think that’s deep-rooted.”
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.”
Families’ Perceptions of the Strengths of
Providing Palliative Care in LTC
 LTC as the preferable location of death for the resident
“We’re 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
wouldn’t see she would still know you, the smells, the odors, the noises
are all something that are familiar to her.
 LTC’s 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. PSW’s
have in general been incredible, they’ve talked to me when I needed to be
talked to.”
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 aren’t comfortable with death and the staff has changed
so much here, there’s a lot of new staff that have not seen death, they
don’t know the signs.”
2)“A lot of staff I find don’t 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 isn’t 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 don’t have time for that” – “The doctor said it has to get
done.” – “And who is he, he’s not our boss.”
3) “I’m new here or I don’t usually work here so I’m 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 don’t understand myself. So, like it’s not in
language that I would understand and I get more out of talking to
somebody than reading it.”
 Insensitive time frame for retrieving resident’s 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 you’re 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 resident
“Well, after something happens to {resident} I’m 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 LTC:
“I think that’s really important that when families come in that
they understand what the institution’s 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 don’t want a call she’s already dead.”
 Accessible staff: “A lot of time when I come up there’s not a soul.”
 Openness around death: 1) “Sometimes a person is alive today and gone
tomorrow and it’s a secret, death’s a secret.” 2)It’s like it happens and
they’re spirited away.”
Families’ Expectations of LTC
 Consistent staff: “You shouldn’t be switching staff around and having people
come in that aren’t used to dealing with the dying and family.”
 Use of a social worker: “For my [family] own, to work through with
somebody…working 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 too…find ways to make people feel more comfortable
with what’s happening…because 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] haven’t 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 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?
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 member’s needs?
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.
Acknowledgement
Funding Provided By:
Social Sciences and Humanities Council of Canada
Special thanks to Bethammi Nursing Home and Hogarth Riverview
Manor, St. Joseph’s Care Group, Thunder Bay, ON