When we are asked, “what does hospice do”, it often leads to another question of why we do what we do. It is the why we do that we that that gives out answers meaning. Lets open our hospice doors and show you around. Come on in!
Here on PEI, we do not have a physical ‘hospice home’. What we do have are many ‘hospice homes’ in the shape and form of our volunteers who are like mobile homes on wheels that travel to meet our care recipients where they are, whether it be in their private homes, a hospital, a long term or community care home while bringing a sense of what a hospice home is unique to them. We are proud of our person-centered care that is tailored to meet each person where they are at.
First, I would like to show you around outside a bit. You will see this sturdy weathervane as it’s always blowing around with the winds of change pointing to individual needs and asks. We take our cue when it points in the direction straight ahead, helping us to identify the priorities of our day and keep us on course. You will see a compass at the door, and this represents the skills we have as coordinators to know and keep the truth north in sight, focused on our motto, to ‘Make Each Day Count’. You will see the lovely care of the grounds and upkeep around, showing the compassion and reverence we have for what we do, knowing we are representing Hospice PEI and our community of caring individuals.
We want to focus your attention on the structure of the ‘hospice houses’ and point out the sturdy and resilient foundation made by our founders, and the community who support us in so many ways. The specially trained volunteers form the walls and the roof which allows us to do what we do each day. The windows and doors, the stairs and closets represent all that have come before us that have guided and shown us what a hospice looks like and what is needed. Now lets go inside and we will show you rooms full of books and beautiful pieces of art that tell many stories.
Our first book, The Book of Volunteer Recruitment, starts will the story of the daily work of being mindful and creative, seeking and recruiting new volunteers. Being resourceful with new ideas and ways to invite potential volunteers to make their time meaningful and appreciated. This section houses 39 volumes, one for each of our years of service to date. The volumes are very heavy to lift.
We evolve and tweak this story book by continuously onboarding volunteers, learning and growing, adding new information as our world as we know it changes. We learn from our joint experiences with each other and those we serve and offer education opportunities that meet the competencies that make an effective, impactful and comprehensive training program helping us to guide new and current volunteers and the rest of the hospice team.
There are many pages filled with getting to know our volunteers, their background, their past experiences with loss, illness and grief. We find out what they enjoy, their likes and hobbies, and encourage them to find out more about us through our website, our social media and tell us a bit of what they have discovered. Our training sessions are an important piece to our story. Through group discussions we see their strengths that are important for us to know so that we can best match them with our care recipients in the best of ways and to make the match as meaningful to both. Reviews of what volunteering looks like, the usual paperwork to complete the process is finalized and they are presented with the official photo ID badge and a huge warm welcome.
Our Book of Active Volunteers continues to be picked up and added to regularly creating many volumes over the years. Pages are added daily with notes on phone calls arranged to discuss the assignments they are on, record how things are going, their time spent on assignments, their ever-changing availability because we know, life happens. We check in and encourage and thank them for what they are doing. The pages increase in their book which becomes volumes for this section of the hospice homes.
In our library we have other sections like The Books of Rounds, telling stories of the hospice coordinators participation in them. As part of the Integrated Palliative Care Program, hospice coordinators attend these meetings weekly, in person or virtually as part of the care team. We participate in discussions offering how we can help and could be of assistance. It bears great witness when you can see how hospice is such an important piece of person-centered care, and so important to be added to the diverse team of doctors, nurses, respiratory therapists, dieticians, physical therapists, and spiritual and social workers. It always feels good when we can offer something.
Our library has many sections of books that each contain many volumes, almost 40 years worth!
Now that we have shown you around, we can open our doors, and we can introduce you to what makes up the beautiful furnishings of our hospice homes and our next book, Our Care Recipients and their Caregivers volume 39 and stories shared by Catherine our East Prince Hospice Coordinator.
The phone rings, it’s Michelle from the PEI Cancer Navigator calling. Susie has to have treatments, and it is costing them $20 per day to get to her appointments and her and her husband are really struggling. Yes Michelle, we can help with this, I will call Susie and get her set up and see how we can help them to make each day count. We offer a weekly drive, and help with her appointment organization, writing things down for her, noting her appointments, writing questions she has down to ask at her next appointment, getting her set up to borrow one of our tablets while she is often at the hospital for 5-6 hours on her treatment days. Susie expresses that she cannot believe there are so many nice people in the world to help, we are helping make each day count. The page is added to the volume.
Meet Rhonda, a nurse at PCH, she wanted to pop in to see if we have anything that could help as she speaks with her family as they have a member who is dying and many members are in denial. Who is Hospice? How can we help? Could she seek our support? Did I have some resources to share with her? Come in Rhonda, lets see how we can help make your dying family members each day count and another page is added to the book.
Jim was referred to us by one of the Palliative Care Coordinators and I rush to arrange a home visit for him. Jim’s home is in disrepair. It is not safe to send volunteers here. I ask if we can get him set up for Meals on Wheels or private hires, or cleaners, arranging to offer what I can to help make each day count. A short time later Jim ended up in hospital and our volunteers were able to spend some time with him there before he died. Today we started another volume. The first page is added.
Meet Isabelle, she is exhausted. Her mom is in community care and although they have a huge family, they are oh so tired, arranging schedules and finding time in all their busy lives. They go and hear the same stories over and over. It has been a long and exhausting time for everyone. I spoke with her on how wonderful a volunteer may be for her mom. A weekly visit was set up and a volunteer spent 4 lovely months with her and gave the gift of getting to know someone brand new, someone to tell her life story to over and over, someone that was engaged and interested and that she perked right up for on arrival, as she knew she was there just for her out of the sheer desire of wanting to be there. It truly made each day count for her. Another page is added.
Meet Shirley, Palliative Home Care reached out and asked if we could help. Shirley was having MAiD in 2 weeks, could we help brighten her remaining time. Just up our alley I said. A volunteer made an audio message for her daughter for her, what a gift that was, to have that gift and be able to play the message in her Mom’s voice whenever she felt the need. What a gift for Shirley knowing she left something so special behind. Shirley loved ice cream and wanted to eat as many as she could before her MAiD date. Outings were arranged and ice cream was savored, and we helped make each day count. We added another page with some beautiful pictures of ice cream outings.
Meet Elsa, she literally had no one, she lived in a small 1 room seniors apartment and a nurse referred her our way. Elsa is in the hospital, and we had volunteers spend time with her, she became so ill it was known she would not be going back home. We took her out on an outing one day and packed up her things and donated them to where she chose, and she brought a few sentimental items back with her to the hospital. The volunteers became like her family, having none and she was able to feel cared and loved before she died, we did all we could to make each day count. Another page.
The hospital called, they have an actively dying patient who has little support, do we have volunteers that can help? A schedule is quickly put together, as often it is not long. We helped to make each day count so that they would not die alone. The last page for today but I haven’t closed the book yes as there may need to be an addition for an afterhours request.
There are many more stories filling out volumes. We serve a large area with an ever-increasing need and many complexities as people journey through their life-limiting diagnosis. Some stories are pages long, some even have chapters and there are those we started a story with but were too late to add more words as their story ended before we could take notes.
There is variety and urgency in the referrals we get, whether it be in person, a phone call, or email. We receive referrals from those working in the medical field, from other community organizations from oncology, dialysis, from mental health, and there are the self-referrals. We prioritize and we have to say no to some that simply don’t meet our criteria, sometimes facing issues with not having a volunteer available to be assigned. We juggle and we sometimes struggle to put things in place, but we do our best to make each day count.
The Book of Record Keeping contains all the notes and stories of the day that are left to record. We begin to put things together, sorting through what was still to do and what still requires some attention. We respond to emails and calls; we reschedule assignments after hearing from a volunteer that has a change in plans or has to cancel. We plan for the things we can, noting upcoming events and fundraisers to assist with and seek volunteer support for. Somedays these pages are dedicated to holding space for the stories we are saying The End to.
In other rooms we have books that record stories about the caregivers that we reach out to to offer out monthly support group, providing care maps and resources for them, offering respite time, connecting and navigating them to other supports that can help such as offering grief support.
Daily work is spent on our relationships in our communities, entering those stories into the book of Partnerships with Stakeholder’s, notes about long term care and hospitals, and medical staff to continue the education on who we are and how we can help. When time allows, we arrange to have Death Cafes, Seniors Cafes, and learning presentations in our communities planned. We seek out opportunities to raise awareness for volunteer recruitment, networking to have shout outs and stories posted, getting shared in the news or other socials in our networking circles. Our eyes and ears are always open as well as our creativity skills on ways to enhance and help bring awareness to hospice services.
The Book of Retention houses stories on volunteer engagements and connection time is planned and arranged. Volunteer recognition and stories written for our socials to show our important value we place on our volunteers. Taking and making the time to check in and thank our volunteers is something we can never do enough of. The giveback to our volunteers is an essential piece.
Well, the day is almost done, and I will do a few more important rituals. I will ensure the day is captured as it should be, the notes made, the important reminders in place, the checking and rechecking that priorities were addressed and that tomorrow has a sense of order to it. It’s important to add in the self-reflection time, for in order to do it all over again and be in the right place to do so, a Hospice Coordinator has to feel the privilege it is to be in this place.