Dying in a Personal Care Home: Family Perspectives

1. Dying in a Personal Care Home: Family Perspectives Genevieve Thompson, RN PhD CHPCN(C) Post-Doctoral Fellow, Manitoba Palliative Care Research Unit Source of funding

2. Outline • Living and Dying in PCH • Why is it Important to Assess Satisfaction? • Research Protocol • What Influences Family Satisfaction? • Recommendations

3. Getting Older… • By 2026, 1 in 5 persons will be over 65 years; • 91% of all individuals over 65 diagnosed with at least 1 chronic condition; • The disability rate for persons aged 65 and older is 40.5%; • Aging of the population and advances in medical technology mean many individuals will be diagnosed and live longer with once fatal diseases.

4. Living in PCH • There are 9,291 Manitobans living in PCH’s; • 5.6% of Manitobans 65 and older live in a PCH but 23.9% of those 85 and older do; • 72% are female; • The majority require maximum dependence on nursing time for assistance with bathing and dressing, feeding, treatments, ambulation, elimination and support, and/or supervision. Manitoba Fact Book on Aging (Centre on Aging); Personal Care Home Program- Manitoba Health Annual Statistics, 2001-2002.

5. Dying in PCH • Rates of non-hospital deaths has slowly risen in the last decade; • Risk of dying in a nursing home increases with age, living alone or lack of social contacts, having some level of functional impairment, and a diagnosis of dementia.

6. Location of Death - Manitoba Menec et al (2004)

7. Dying in PCH • Research evidence on the state of dying in PCH is relatively sparse; • Three studies in particular provide profound insight into the realities of the dying experience: • Forbes (2001) • Kayser-Jones et al (2003) • Hanson et al (2002)

8. Family Satisfaction with Care • Families play an important role as caregivers and serve as formal and informal proxy decision makers; • Families are recipients of care and who have their own unique perspectives on the care delivered; • Some preliminary evidence suggests when families care needs are met they are more satisfied; • Current research on family satisfaction with end-of-life care contradictory.

9. “How people die remains in the memories of those who live on” Dame Cecily Saunders

10. 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?

11. Research Study Protocol N=38 N=12 N=404 N=87

12. Data Collection - Measures • Modified Toolkit of Instruments to Measure End of Life Care (TIME)(Teno et al., 2001) • An after-death bereaved family member interview tailored for administration based on setting of care. • Focus on measuring whether care met the needs, expectations and satisfaction of family members; • 38 questions measure seven different domains of care.

13. Facility Characteristics (N=12) • 0 to 24 participants responding from each facility; • Bed size ranged from 78 beds to 314 beds (M=219.2, SD=65.8); • 8 non-profit and 4 proprietary facilities; • 7 non-denominational and 5 with religious affiliations; • All from suburban Winnipeg.

14. Family Respondent (N=87) • Female (67.8%) • Mean age 61.1 years • Son’s, daughters (and in-laws) (73.5%) • Visitation: • Daily (33.3%), • 2 to 3 times/week (20.7%) • 4 to 5 times/week (25.3%) • once a week or once that month (20.6%)

15. Resident

16. Death Characteristics

17. Drivers of Family Satisfaction • Factors influencing satisfaction are multi-faceted; • Thompson (2007) noted that 77.4% of variability in family satisfaction attributable to: • Contact and communication with nursing staff • Feeling that the HCA listened to concerns • Feeling they had received enough emotional support • Providing consistent care • Care met expectations

18. Significant Survey Findings

19. Significant Survey Findings

20. Areas of Focus Group Discussion • There are 7 areas from the focus groups which overlap with the survey findings: • Communication & Interaction with Care Providers; • Pain & Symptom Management; • Physician Presence & Contact; • Staffing & Staff Education; • Psychosocial, Spiritual, & Bereavement Support; • Transfer to Acute Care Facilities; • Advance Care Planning.

21. 1. Communication & Interaction with Care Providers • Importance of involving families in decision-making. • Communication around what to expect at the end of life; • Sharing of information in a timely, sensitive manner • Providing emotional support to families; • Compassionate, humanistic behaviors play a key role.

22. …when she [mother] was going through her dying process, people would come in and they would sit with me and they would talk with me and that was the hairdresser, that was the lady who brought the dogs, and you know, so it wasn’t just the nursing staff… it was wonderful for the family to have someone show us that kindness.

23. Core Competency - Communication • What are effective communication strategies you could use with families in your care environment? • How do you share information with families? Could it be improved? • What are simple ways to show empathy? • How can you involve family members in decision-making?

24. 2. Pain & Symptom Management • Pain management a cornerstone to ensuring excellent care at the end of life; • One barrier to pain management identified by participants was the manner in which medications were ordered; • ‘Other’ symptoms require attention and management (i.e delirium, restlessness, agitation, loneliness).

25. 80 71.8% 72.3% 69.5% 70 56.5% 60 50 43.4% Yes 40 No 30.5% 28.2% 27.7% 30 20 10 0 Pain Anxiety or Sadness Other Symptoms Trouble Breathing Pain & Symptom Management

26. Discussion Point – Pain & Symptom Management • How could you address family concerns about inadequate/too much pain medication? • As a health care aide you are concerned the person you are caring for is in pain, how do you approach the nurse? • As a nurse, you are concerned the pain medication order is not adequate, how do you discuss this with the physician?

27. 3. Physician Presence & Contact • Concern over lack of continuity and frustration over the limited contact with the physician; • Highest area of unmet need identified by family members (84%).

28. 90 82.6% 82.8% 80 70 57.5% 60 50 Percentage of Respondents Yes 42.5% No 40 30 17.4% 17.2% 20 10 0 Spoke with Physician in last week of life Aware of Doctor in Charge Clear who Physician in Charge Physician Contact

29. It seems as soon as you go through the nursing home doors you become someone else’s patient so all of your past relationships go away and you seem, you’re 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 it’s gone.

30. 4. Staffing & Staff Education • Perception staff ‘doing the best they can’ with limited resources; • Comments by participants indicate a perception that staff lacked educational preparation in end-of-life care; • Providing education and training not a panacea.

31. ... For days they were trying to give her, her other pills…but they wanted to know [should we stop], and they were trying to get her to swallow them. After a couple of days they asked us if they should be bringing her food, and like we don’t know the process, I don’t know when she needed that…you know it’s just all those little things that I thought they should have had, someone should have been making that call…

32. 5. 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.

33. 100 87.4% 90 75.0% 80 75.3% 70 60 Yes 50 No Percentage of Respondents 40 24.7 30 25.0% 20 12.6% 10 0 Discussed Your Religious Beliefs Discussed how Feel After Death Respondent Wanted More Support Spiritual, Psychosocial & Bereavement Support

34. Core Competency • Do you regularly assess Spirituality? How would you do this? • Are there ways you could prepare family members for the death of their loved one? • What bereavement supports does your care environment have? Could they be improved?

35. 6. 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.

36. There’s one time when I look back on my mom’s 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 her…telling me that the things my mother was going through was actually that she was dying.

37. 7. 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.

38. 94.4% 100 87.3% 90 77.0% 72.4% 80 70 60 Yes 50 No 40 27.6% Percentage of Respondents 23.0% 30 12.7% 20 5.6% 10 0 Proxy decision- maker identified ACP in place Discussed ACP with physician PCH respected ACP Advance Care Planning

39. 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.

40. I had this sense, of not failure, but I didn’t deliver what I promised her because we had this conversation [about being pain free], and I promised her and there’s the huge sense that I let her down and I hate that; I think I’ll always feel regret for what happened in that week.

41. Recommendations • Develop programs and policies in end-of-life care; • Develop indicators of end-of-life care success; • Embrace a philosophy of palliative care in facilities; • Provide clarity around the language used in ACP; • Improve physician continuity;

42. Recommendations • Improve resources available for end-of-life care; • Provide bereavement follow-up and offer counseling after decision-making; • Provide an exit interview for all family members; • Increase the use of volunteers; • Explore ways to avoid hospital transfers.

43. I think most people [who] go there [PCH], eventually pass away…I’m amazed that the death word is not part of their business. Funeral homes don’t mind talking about death. There are acknowledged segments of society who are in the business of giving people the best service as part of this process, why can’t that be something they’re equally proud of as their hot meals.

44. Concluding Thoughts • Might need to reconceptualize dying from a defined event to an ongoing, evolving process; • Many of the factors which influence family satisfaction are modifiable; • Ensuring excellence at the end of life important to family members.

45. Contact: genevieve.thompson@cancercare.mb.ca