1. Family Palliative/End-of-Life Care in Long-Term Care Homes November 4, 2010 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

2. 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

3.  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 Research Issue

4. 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

5. 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

6. 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

7. 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

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

9. Perspective of Families Family Panel

10. 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?

11. Perspective of Families Survey Results

12. Quality of Life in Life Threatening Illness: Family Caregiver Version (Cohen, et,al – survey, 2006) DimensionExample Environment“I had the privacy I wanted” Patient State“The condition of _____ was distressing to me” Carer’s Own State“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“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”

13. Results Elm Pine Elm; n=22 Pine; n= 14

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

15. 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. What do You Most Want the Care Team to Know?

16. Family Perceptions of Care (Vohra,et al. - survey 2004) SubscaleDefinitionExample Resident CareFamily members’ opinions of care provided to the resident. “The staff treated my family member with dignity”. Family SupportRefers 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 member’s last days”. CommunicationConcerning the timelines, comprehensiveness, and clarity of the communication between staff and the family member. “The staff kept me informed about my family member’s health”. RoomingFamily members’ perception of appropriated placement of the resident in the facility, and privacy. ‘My impact on what happens in my department is large.’

17. Results Elm Pine Elm; n=8 Pine; n= 14

18. 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 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

19. 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 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 Factors that are Important to End-of- Life Care

20. Perspective of Families Interview and Focus Group Results

21. 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.” 

22. 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.”

23. 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.”

24. 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.”

25. 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.”

26. 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.”

27. 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.”

28. 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.”

29. 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.

30. 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.”

31. 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.”

32. 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.”

33. 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.”

34. 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.”

35. 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.”

36. 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.”

37. 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?

38. 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?

39. 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.

40. 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