1.  OVERVIEW:

Ten Hospice Society volunteers joined Director Malerie Meeker and Vice-President Anna Byrne to share their personal experiences as hospice volunteers and to offer input into the Hospice House visioning/community engagement process.

As with Focus Group 1, the dialogue was heartfelt. Hospice volunteers bring knowledge, passion, and commitment to their work. Their presence and their contributions to the visioning process reflected these attributes. And again, there was a significant amount of commonality in the opinions of the volunteers regarding what constitutes excellent hospice care and what would be required to execute that care in a hospice facility. What was new to the mix was their perspective.

Focus group 1 was comprised of individuals who had experienced the loss of a loved one; the sharing of their stories still painful, their grief ever present. Focus group 2 volunteers are dedicated to making the end-of-life journey the best it can be for every individual in their care and for their loved ones. Although this work can also be emotionally taxing, different interactions are at play. To that end, much of the input focused directly on client care, often with specific suggestions on how to manage pain, minimize discomfort, alleviate fear.

We are grateful to have had the opportunity to hear from our volunteers and to integrate their ideas and opinions into the visioning process. These ideas and opinions are summarized in Section 3 – Data Analysis and Summary of Key Themes. Section 4 provides the transcribed data.

 2.  AGENDA:

• 7:00 pm          Welcome
• 7:02 pm          Brief overview of the Hospice House vision and the community engagement campaign 7:08 pm Explanation of how the work done this evening will be included in the plan
• 7:12 pm          Explanation of what to expect in the session
• 7:15 pm       Focus group dialogue
  • 7:15 pm Describe one experience you had as a volunteer that was Memorable, that you think about That experience may have been sad or happy. Either way, it is one you reflect on often.
  • 7:30 pm What were the elements that were helpful/good?
  • 7:45 pm What elements hindered care / were not good?
  • 8:00 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?
• 8:20 pm          Closure and next steps

3.  DATA ANALYSIS AND SUMMARY OF KEY THEMES:

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

Priority 1: Client-Centered Care

As noted in the Overview, the focus throughout the session concentrated on hospice client care. The majority of the What we want” and What we don t want” aspects reflected a commitment to person-centered and individualized care. Managing pain, alleviating fear, patient advocacy, providing non-judgmental, spiritual and culturally-appropriate support, facilitating effective communication – all were discussed in detail and repeated often. Ensuring medical/ professional staff are appropriately trained was imbedded in this client care priority.

Reflection: This priority supports the recommendation articulated in Priority 1 from the Focus Group 1 report: ensuring Hospice House is staffed with knowledgeable and compassionate professionals and volunteers. Emphasis for the volunteer group was put on staff s ability to provide individualized care. Again, 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. Additionally, appropriate training for all staff (VCH staff as well as hospice staff and volunteers), especially psycho-emotional training, was highlighted.

Key words: Client directed, Compassion, Gratitude, Dignity

Priority 2: Welcoming, Comfortable, Homey Environment

Many of the same environmental aspects the volunteers want at Hospice House were identified by the first group. In fact, when it came to identifying the ‘absolutes’, this group provided quite detailed information about the environment. (Please referred to the transcribed data in Section 4.) A peaceful, comfortable space with a kitchen, a large common/living room with space for family and friends to gather or rest, outdoor space, a sacred space – all are important. The ‘don’t want’ words associated with the environment were: medical model, too many rules, assumptions.

Reflection: Ensuring that ‘Hospice House does not reflect a medical model’ was identified by the volunteer group as absolutely important. To actualize the vision, we repeat from the first report: balancing the needs of the community and governmental health-care related rules and regulations will be challenging. We will need to bring our “can do” attitude coupled with lots of inventiveness and ingenuity to the negotiating table as we move the project forward.

Key words: Enough space, Peaceful, Comfortable

4.  TRANSCRIBED DATA:

Volunteers were asked to reflect on the stories they heard, 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 volunteers would want at Hospice House.

WHAT WE WANT:

Interpersonally:

Patient-centered care Client directed Acceptance Individuality

Honoring client s wishes Comfort

Compassion Heart

Client feeling really cared for Communication

Personal connection Physical connection

Gratitude

Gratitude to help, gratitude for the help

Knowing I m grateful to be there; grateful for being part of their life Joy

Laughter

Volunteers and staff who demonstrate empathy Really listening to client

Living life Advocacy Grief Praise Serene

Community Supportive community Sense of community

Community involvement Communities blending Advocate

Support for family and friends Friendship

Shared time Shared experience

Educationally:

Being comfortable talking about death

Time and support for methodical thinking

Environmentally:

Space provided for large family and friends to gather Space and atmosphere to share stories

Shared space

Volunteers were asked to reflect again on the 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:

Client in pain Pain (client) Pain

Client dying with regrets

Client with unresolved issues, i.e., family, religious, etc. Fear

Client scared Lonely death Client isolated

Judgement

Pressure to do it right

Assumptions about the needs and wants of the client Rigid medical model

Family – medical division and/or disagreement

Too much structure, too many rules. Allow family and friends to bring in whatever – booze, pets, etc. Narrow constraints on what is okay (No Be quiet!”)

Limits on emotions – what is acceptable, what is not Limiting visitors in numbers or time

Racism, cultural or religious assumptions Over controlled

Lack of communication

Staff not listening

Stressed out medical staff – staff shortages

Dying people and/or their families and friends being turned away

Environmentally:

Cramped ugly rooms Bad food

In the final step, volunteers 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:

• Mandatory training for medical and hospice staff: appropriate medical training and psycho- social training for spiritual/emotional/social well-being
• Good communication between clients/families/staff
• Provision for flexible palliative care orders
• Experienced staff
• Alternative therapeutic modalities welcomed
• Facilitators to help with advanced care planning,
• Peaceful atmosphere
• Welcomer at the door
• Outside garden and patio space, patio heaters
• Big fully equipped kitchen
• An area to honor the individual who has passed – name, picture,
• Sacred space for reflection, meditation, prayer
• Homey atmosphere: colour, art, pillows, throw blankets
• Big windows, air, light
• Music: piano and instruments
• Art supplies
• Toys
• Pets
• Library
• Fireplace in the foyer
• Enough space for families and friends to gather
• Space for volunteers – could be shared space for families
• Comfortable couches/hide-a-bed for families in the clients’ rooms
• Rooms have small amenities for making tea, having snacks,
• Individual thermostats in each room
• Soft lighting – no fluorescence!
• Good sheets/bedding
• Solid honoring plan for how dying clients enter and leave the hospice building upon dying

5.  QUOTES STORY SHARING:

What I worry about the most is, will my clients have anyone with them when they die? Many have no family; many have died alone. I worry, will they be discovered days later? And dying in a shared room at the hospital. Not the way.”

“…The young man had come to visit his uncle; we chatted a bit. He was troubled because he had unresolved issues with his father, who had already passed away. Based on what he told me, I could tell he wanted to talk to his uncle. I left them alone. I could see he was hoping his uncle would take a message to his father for him.”

My husband has a big family. Big! We had all gathered to say goodbye to his mom; there were seventeen of us. We were loud! There was joy, and laughter, and storytelling and wine. I kept worrying we were too noisy or taking up too much space. But we were made to feel so welcome.”

A dear friend was dying, and the whole community came together. We used a website to schedule visits and tasks – cleaning, food. Everyone came together – it was beautiful. It s a memory that stays with me.”

She was very clear – she was going to use MAID. She knew exactly what she wanted, and I was able to help her prepare in just the way she wanted. She planned her celebration of life. We even sang together on a video and sent it to her daughter.”

And she kept telling me about how grateful she was for me being with her.”