Survey Submissions September 29 – November 11, 2022
1. OVERVIEW:
The community survey was developed with the objective of assessing the community’s support for Hospice House, and to seek information and guidance regarding key aspects of the proposed facility. Also included was an opportunity for responders to brainstorm ideas for fund-raising and mobilizing community assets. The platform was Survey Monkey.
The survey launched on September 29, 2022 and closed on November 11, 2022. It was available online, accessed via our website, QR code and links posted in our newsletters, on our social media, and articles and ads in the Powell River Peak and qathet Living Magazine. Hard copies were available at Gerry Gray Place, Base Camp Marine Avenue, Base Camp Townsite, and the Recreation Complex. Copies were also distributed to community groups.
177 surveys were returned, providing the Society with a wealth of information, some quite detailed and nuanced.
The Hospice Society is grateful to the community for their time and attention in completing the survey. This report summarizes the main ideas; however, all responses will be reviewed numerous times through the planning for and implementation of Hospice House. Thank you.
2. ANALYSIS METHOD:
The survey solicitated both quantitative and qualitative information. Collated survey data is shown in
4. Appendix. Compiled raw data will be retained by the Society.
Critical to the analysis process was distilling the text – which was significant! Our community had a lot to say about how they envision end-of-life support in a dedicated hospice facility. Responses were grouped into weighted themes, determined by the number of similar responses. These themes were then used to determine priorities. The quantitative responses and the summarized priorities are below.
3. KEY SURVEY FINDINGS:
Quantitative:
- Survey results reflect strong support for hospice services and specifically for Hospice House. When asked “Would you access hospice care for yourself or someone close to you if needed?”, 98.2% of 169 responses responded positively. The quantitative questions had associated qualitative questions. Narrative responses that focused on the need for a hospice facility in our community and on support for the project were recorded at 58% of respondents in the 177 surveys.
- Existing palliative care and hospice care services in the qathet Region are appreciated. Both services received high approval ratings from those who had or have someone close to them receive services: a score of 4.98 out of 5 from 75 respondents for palliative care and a score of 5.0 from 45 respondents for hospice services.
Two respondents submitted information about the lack of follow-through by hospice volunteers which requires the Society’s attention (See Section 4. Q 1- b.)
Qualitative:
- Respondents envision a Hospice House with a homelike, beautiful, serene setting. Noted in the narrative responses were access to nature, music, space for family and friends, kitchen facilities, common and meditative areas – a non-medical facility. (81% of respondents in 177 surveys) We also asked respondents to rate five key design features by importance to them (this required a quantitative response). A ‘sacred space’ was rated highest, followed in order with a fully functioning kitchen, outdoor space, sleeping accommodation in patients’ rooms for family or friends, and ensuring rooms remain dedicated for hospice patients.
- Appropriately trained staff is critical to a successful Hospice House. Staff should have appropriate training. They need to be compassionate, experienced, kind, inclusive, and culturally sensitive. (69% of respondents in 177 surveys)
- Hospice House should be autonomous and not fall under the regulations of a restrictive medical facility. Respondents wrote about the need for palliative care provided by qualified medical practitioners but emphasized that hospice care should be person-centered and family-centered and take place in a home-like environment. Respondents expressed concern that governmental restrictions could compromise the vision. (42% of respondents in 177 surveys)
Reflection:
The three key areas identified in the qualitative responses matched three of the four priorities from the focus groups, indicating there is cohesion of vision for Hospice House across participants involved in the engagement campaign. These results are consistent with earlier consultation and visioning initiatives undertaken by the Society.
(* 1 – Homelike atmosphere / 2 – Knowledgeable staff / 3 – Autonomous. Client-centered care is the fourth priority – which was also included in some of the narrative responses but was not as prevalent as the other three themes.)
Next Steps:
The last step in the community engagement process is to deliver the findings from the focus groups and the survey to leaders from ‘Key Organizations’. The objective of that meeting is to solicit support, partnership, and contributions from our organizational community for Hospice House. That meeting is set for November 24, 2022.
4. APPENDIX – SURVEY DATA:
- PALLIATIVE CARE AND HOSPICE CARE – THERE IS A DIFFERENCE: Palliative care is specialized medical care for people living with a serious illness. Hospice care focuses on the social, emotional, and spiritual aspects of a person who is approaching the end of life and on support for family and friends who are bereaved.
- Have you or has someone close to you received palliative care in Powell River?
175 Responses
40% Yes
60% No
How would you rate that experience? A good experience is rated 5, a poor experience 1:
75 Responses 4.98
If you rated the experience low, what could have made it better?
36 responses: Many responses were reflected in the quote: “Dying in a hospital room – even surrounded by friends and family – is still just that. There was no spiritual/sacred aspect, no emotional support. We can do better!”
Summary of Responses:
- Stand-alone hospice: e.g., non-medical setting, less crowding, private room, appropriate setting
- Better overall communication: e.g., positive attitudes and morale needed, better communication before, during, after dying, better transfer of information, more open discussion about death
- Appropriate staff: e.g., more compassion, respect for the dying, more care for family, more knowledge about end-of-life care
- Have you or has someone close to you accessed hospice care in Powell River?
169 Responses
22.5% Yes
77.5% No
How would you rate that experience? A good experience is rated 5, a poor experience 1:
45 Responses 5.0
If you rated the experience low, what could have made it better?
19 Responses: While there were often references to a stand-alone Hospice House, due to the important nature of this feedback, all the recommendations for the Society are listed below.
Summary of Responses:
- Stand-alone hospice: e.g., dedicated building, home-like
- Recommendations for the Society:
- Follow through with commitments: Two responses indicated that volunteers were assigned clients but did not show up at the scheduled time
- When individuals are still alert and mobile, a specific window of time should be set for volunteer visits rather than dropping-in
- Better training. One individual did not feel supported, in fact, felt that s/he was lectured rather than dealt with compassion
- Volunteers need to be available 24/7
- There is still confusion in the community about what hospice care means and who provides it
- One respondent said the family was unable to locate hospice services (October 2020)
- More volunteers are needed
- Have you or has someone close to you accessed hospice care outside of Powell River?
166 Responses
45.2% Yes
54.8% No
Please tell us about your experience. What was good about it? What could have made it better? 71 Responses: Heartfelt vignettes were captured in this section of the survey. Many thanks to everyone who shared their story.
The positive comments about the end-of-life journey occurring in a dedicated facility were repeated over and over. “…I know that having a private space, comfort for both the patient and the visitors, access to kitchen facilities in order to provide simple things like a cup of tea and caring and compassionate people to talk to make a huge difference in a very difficult situation.” And “Beds are sorely needed and I’m really glad it’s in qathet’s plans.”
Summary of Responses:
- In addition to a beautiful homelike environment, key aspects of successful care in a hospice facility are:
- Knowledgeable and compassionate staff
- Respect and effective communication
- Interactions and support are respectful
- Being able to stay with family in their room
- Kitchen, outdoor space, music
- Aspects that could make a valuable experience even better are:
- More nurses and more nurse time
- Open air – fresh air – nature
- Canuk Place Children’s Hospice and Kamloops, among others, were noted as great models
- Would you access hospice care for yourself or someone close to you if needed
169 Responses
98.2% Yes
1.18% No
- HOSPICE HOUSE – A NEW COMMUNITY SERVICE: Hospice House will provide a home-like environment with private rooms and space for family and close friends. It will complement our existing programs. (Please use this link to explore hospice programs currently available: https://www.prhospice.org/).
Please think about an environment designed to support individuals nearing the end of their life. Please prioritize the list below with 5 being essential, down to 1 being nice, but not essential. If you have anything to add, please use the space below.
Note: Five key design aspects to be included in Hospice House were previously identified by Society board, staff, members, and volunteers. This question was included in the survey to rate those design aspects by importance to community members. The online survey was filled out differently than the paper survey and people responding to the online survey indicated that it was hard to choose between things as many found them equally important.
169 Responses
5 Sacred space: a quiet room for reflection, meditation, prayer
4 Fully functioning kitchen for use by families and friends of individuals at Hospice House
3 Outdoor space: an accessible garden area
2 Pull out couches or similar for family members or friends to nap/sleep in the room
1 Hospice House beds/rooms assigned for hospice patients and families only (no other patients could access hospice beds/rooms)
52 Responses Other: Please describe:
- All the above are critically important for Hospice House … the number system is misleading
- Caring and knowledgeable staff with specialized training; also, culturally appropriate care
- Activities for patients when family or friends are not there
- Common area, library with resources
- Pets, kids, music, laundry machines … all okay
- Acceptance
- THE REALITIES OF PROVIDING HOSPICE CARE: The Hospice Society does not receive contractual government funding; programs are sourced by donations, fund-raising, and grants. Building Hospice will be made a reality by the generosity of our community, fund-raising, grants, and financial contributions from the Regional Hospital District.
The good news is we live in a region with many assets. Please give us your ideas on how to mobilize those assets:
Who or what organizations do you think should be involved in the development of Hospice House? How should they be involved? Do you have ideas about how to better engage the community in support of this initiative? This is the brainstorming part of the survey; any and all suggestions are gratefully accepted.
101 Responses Summary of Responses:
- Community awareness and education needs to be a priority; consider developing a video and host open houses
- Make the public aware of the fundraising campaign – large billboard or similar
- Snappy slogans and logos
- Connect with other hospices around the province to learn how they accomplished their goals
- Service clubs, community foundations, local businesses and church groups were targeted for fundraising activities and donations
- The City should be a major funder, as should the health authority and provincial government
- Grants and foundations
- Mobilize volunteers – like “barn raisings”
- Multiple fundraisers and pins to people to wear (…remember “I’m a Complex Booster!”)
- Solicit pledges of funds or of materials
- Community challenges
- Involve wealth management consultants for legacy gifts
- IS THERE ANYTHING YOU WOULD LIKE TO SHARE WITH US REGARDING THE DEVELOPMENT OF HOSPICE HOUSE?
79 Responses: Support for the community engagement campaign was captured in the quote: “I would like to know there was input more than a quick survey from families who have experienced the loss of their loved ones in hospital or in a hospice. We need to get it right!” Most of the responses included statements of thanks for bringing Hospice House to the community.
Multiple responses echoed this sentiment: “I strongly support and encourage your ‘team’ to continue to follow every avenue of support. There must be many businesses and individuals with a desire to see Powell River get their own Hospice House. When people see first-hand how tender the care, how loving the environment, how inclusive the Hospice Society, and how relieved the patients (and their families are) to be able to die with dignity, with less pain yet more quality time and love, it is truly a blessing not to be missed.”
Summary of Responses;
- This is a much-needed community service
- Ensure it is a homelike setting, with access to nature. Lots of windows
- Ensure staff are knowledgeable and experienced. Appropriate training is critical
- Locate the facility close to the hospital for emergency care and shared resources
- Multi access for services, not just the internet. Phone, paper, drop-in
- Autonomy – give the Hospice Society the ability to manage the service and budget
- Strengthen the relationship between palliative care and hospice care
- Ensure that Hospice House meets the varied needs of our community. In addition to traditional care, the facility needs to be able to support children and youth if needed, individuals who choose MAID, etc.
- A non-denominational, non-religious environment is important
- Ensure there is connection and partnership with the Tla’amin Nation
“Anything that can be done to ensure the hospice house is only staffed by people experienced and committed to quality hospice care is critical to the experience of people accessing hospice services. I would emphasize doing it well the first time even if it takes a long time to get there. We do not need another medicalized building in a parking lot that barely feels like a hospice. We know what the community really needs, and it is a deeply meaningful and thoughtfully crafted environment for people that are dying and their loved ones. Let’s make it a home and a place where people want to be. Thank you for all your incredibly hard work and dedication with this!”
