Hospice House Community Engagement: Summary of Focus Group 1

1.  OVERVIEW:

 Seven community members joined PR Division of Family Practice – Practice Lead Christien Kaaij and PR Hospice – Director Malerie Meeker in an intimate exploration of their personal experiences with and support of individuals at the end of their lives. The sharing was heartfelt.

Interestingly, there was a significant amount of commonality in the opinions of the participants regarding what constitutes good and not good care and support at end of life and for those left behind. These opinions are summarized in Section 3 – Data Analysis and Summary of Key Themes.

The Board of Directors is grateful to these participants for their significant contribution to the Hospice House community engagement process.

 2.  AGENDA:

• 9:00 am          Welcome and introduction of Facilitators
• 9:02 am          Brief overview of the Hospice House vision and the community engagement campaign 9:08 am Explanation of how the work done today will be included in the plan
• 9:12 am          Explanation of what to expect today 9:15 am         Focus group dialogue
• 9:15 am           Tell us your story
• 10:15 am         Break
• 10:30 am        What were the elements that were helpful/good?
• 11:00 am         What elements hindered / were not good?
• 11:15 am          Looking forward, what should we work towards to ensure Hospice House meets the needs of individuals at the end of their life and their family/friends? What should Hospice House look like? What are the absolutes?
• 11:45 am        Closure
• 11:50 am        Next Steps and Thank you: how to stay involved

3.  DATA ANALYSIS AND SUMMARY OF KEY THEMES:

Based on the input provided by the participants, three priorities emerged. A transcription of all the data can be found in Section 4.

Priority 1: Knowledgeable and Compassionate Staff and Volunteers

While participants could readily identify the environmental aspects of a Hospice House that they ‘wanted’, almost all the aspects they identified as ‘don’t want’ related to personality and/or professional and volunteer behaviour. Medical professionals and volunteers who care, who are kind and knowledgeable, and who demonstrate compassion and understanding, were identified as critical components of the Hospice House participants wanted. Much more emphasis was put on the need for positive interpersonal conduct and relationships than on the environmental conditions of an envisioned Hospice House.

Reflection: This priority speaks of the need to ensure the society’s hiring and training policies and practices are such that the work of their staff and volunteers clearly reflect the society’s mission, vision, and values.

Key words: Compassion, Listen, Slow down, Care, Support, Knowledge

Priority 2: Welcoming, Comfortable, Homey Environment

All aspects of a peaceful, comfortable, loving space were identified by participants. Summarized, these words reflect “home”. The consensus was it is totally possible to create a home-like atmosphere where everyone feels well supported AND where their loved one could receive needed palliative care. The ability of having easy access to a kitchen, the importance of having homemade meals any hour of the day, as well as the ability to cook and bake, were emphasized. A comfortable common/living room, space for family and friends to rest, and a serene atmosphere were also identified as very important. The ‘don’t want’ words associated with the environment were: clinical, hospital-like, sterile.

Reflection: This priority may seem easy on the surface to actualize; however, balancing the needs of the community as expressed through this Focus Group and governmental health-care related rules and regulations will be challenging.

Key words: Kitchen, Soft, Comfortable, Homey, Music, Serenity

Priority 3: Autonomy

Participants all agreed that they felt Hospice House should be autonomous, not restricted by government regulations. In fact, they expressed fear that a partnership with Vancouver Coastal Health (VCH) could so negatively impact the process that Hospice House would be at risk of becoming another hospital or long-term care like facility. The procs and cons were discussed several times. Participants agreed that without a partnership with VCH, annually sourcing Hospice House operations through donations, fund-raising, grant-writing, etc., would likely not be feasible. (Estimated at $500,000 annually.) Concern remained that the vision of Hospice House could be severely compromised within a VCH – Hospice partnership.

Reflection: Realizing this priority represents a significant hurdle for the society. Careful planning, strategic collaboration, emphasis on our community and what our community identifies as important, will all be key in the negotiation process.

Key words: Taking over, What we want, Community

4.  TRANSCRIBED DATA:

a)   Participants were asked to reflect on the personal stories they heard. They were then asked to respond to the question “What were the elements that were helpful/good in these situations?” and write these elements using one or two words on sticky notes. The responses were grouped into themes. These elements reflect what they would want at Hospice House.

WHAT WE WANT:

Interpersonally:

Support – from those you know and those you don’t (”people come out of the woodwork to help”)

Professionals continuous reaching out – as per RCMP trauma unit / Ongoing support Compassion / Devotion / Caring / Love

Listening

Skilled help / Skilled volunteers

Professionals with a soft touch – gentleness for the individuals, family, friends, visitors Compassionate helpers and professionals who remember that the person who is dying hears

Everything (“the ears go last”)

No rushing

Personalized care and support

Doctors, medical community and VCH staff to be aligned with hospice mission, vision, values

Educationally:

Advanced care planning information / Information on MAID Informational pamphlets

Books with good knowledge about death, dying, bereavement

Environmentally:

Peaceful, quiet ambience for a peaceful passing / Loving atmosphere Welcoming atmosphere 24/7 – family and friends welcome at all hours Welcoming greeters

Kitchen (This came up multiple times: the ability to cook, cooking for family and others in the facility) Home cooking – smells of fresh bread and cookies, etc.

Space and furniture in the room for family and friends to be comfortable, nap if needed Incense

Cozy quilts and blankets throughout – pillows/stuffies Music / Piano

Soft lighting / Flicker candles / Lamps rather than overhead florescence lighting Ability to be together for storytelling and/or reading

Large and comfortable common room/living room Sacred / Serenity space

Outdoor space / Garden Dogs and other pets

No hierarchy – no uniforms. Staff in street clothes Privacy for the individual, family, and friends

b)  Participants were asked to reflect again on the personal stories they heard and respond to the question “What were the elements that hindered the process or were not good in these situations?” They wrote these unhelpful elements using one or two words on sticky notes which were also grouped in themes. These elements reflect what participants would not want at Hospice House.

WHAT WE DO NOT WANT:

Interpersonally:

Business-like staff approach: rushed, not personalized, dismissive, lack of compassion, impatient Rushing family after the death

Staff or volunteers who are not well trained

Pain and anxiety not well managed – as are possible if done well Condescending staff

Verbally abusive staff

No one to advocate on behalf of the client / family when needed

Lack of choice / Rule-bound (“you can’t do that” instead of “let’s find a way”)

Staff too busy to take time to talk (“where are the social workers? Doctors?” when we need them?)

Miscommunication between staff / Miscommunication with province-MAID staff

Staff unwilling to answer questions asked by the individuals, families, friends (re: meds, etc.)

Educationally:

Educational materials not available

No information available in print or via staff on medications, MAID, etc.

No information about the facility: garden, sacred space, guidelines for kitchen use, etc.

Environmentally:

Clinical atmosphere / Cold atmosphere

Yelling: staff yelling from room to room / Individuals yelling from their rooms to get help Crowding / Lack of privacy

c)  In the final step, participants were asked: “Given what you have identified as good and not good aspects, what are the ‘absolutes’ you would want incorporated in the vision of Hospice House?”

ABSOLUTES:

• Help to cultivate a climate in our community where we can have meaningful conversations about dying and death. Providing good information about end of life and bereavement is important
•  The right staff! Welcoming, knowledgeable, compassionate
•  A comfortable, homey ‘personalized’ building with 24-hour access. Music, soft lights, peaceful
•  Fully functioning kitchen, outdoor space, serenity room or sacred space
•  Comfortable family space – with the ability to stay in the client’s room or stretch out in the common area. Pet friendly

5.  QUOTES STORY SHARING:

 “Every time you walked in there were these amazing smells coming out of the kitchen. They fed our whole family.”

“No one wore scrubs. It was like sitting down and talking to a good friend.”

“We are so not equipped to deal with grief. My vision is to help anyone I can to deal with their grief.” “The person at the BC Bereavement Helpline was incredible. She helped answer the questions I didn’t even know I needed to ask!” (BC Bereavement Helpline website: https://www.bcbh.ca/)

“The RCMP reached out to me regularly for 18 months. The support they offered was exceptional.” “My daughter spent a good part of her final days in the hallway of the ICU. There is no other way to say it. Our health care system sucks.”

“There are so many people out there who really want to help. But when you are grieving, you are in shock. You don’t know what you need. You don’t know how to ask for help. The great thing is – some people don’t need to be asked they just show up.”

“There was so much beauty when I walked in. Beautiful surroundings. Beautiful atmosphere.”

“I’m really, really worried that if Hospice House is built as part of another health care facility that the Health Authority will just take over. It makes me cringe.”

“Personalization is so important. My dad was a devout Catholic. When I burned the incense that they use in church, and put a Rosary in his hands, he visibly relaxed.”

“You know what made the difference? Little acts of kindness from people I didn’t even know.”