Hospice at Glengarda: Broken Being Made Whole
Unless the Lord builds the house, its builders labour in vain. Psalm 127:1
I have recently been introduced to kintsugi, a Japanese art of repairing broken pottery by mending the areas of breakage with gold, silver, or platinum. It treats the area of breakage as part of the history of the object, rather than something to disguise. It treats the repair as art – as the broken being made whole. I have been asked to reflect on the journey from no hospice to now having a lovely 15 bed “Hospice at Glengarda” in Saskatoon. Perhaps the images of building a house and repairing what is fragile and in need of tending can be melded in this story.
I first need to acknowledge that there are so many who have been more integral to this project than I. But, in my small corner of contribution, I have been amazed and honoured to work alongside others in this birthing-building-repairing project.
As the rules of our society settle into new pandemic norms, our health care teams continue to feel the uncertainty of the road ahead. The last two years have been soul-stretching. Many may feel a bit broken and worn out. How will we find our way to our ‘brokenness being made whole’? I believe together. Perhaps this also wonderfully reflects the core of palliative and hospice care – finding our way through brokenness together, wholistically caring for patients and families, right to the end of these days and into what glory comes next.
First, I express my gratitude to so many. For day-by-day courage with ever changing new norms. For great teamwork. For sacrifice. For great generosity. For the opening of Saskatchewan’s first free-standing Hospice during this life-changing pandemic.
I was born and raised on this rich prairie soil. I come from hard-working immigrant Swedish heritage. My parents chose agriculture and nursing as their vocations. I chose to train in medicine in this province and married a generous, humour-loving man over 40 years ago. We have been gifted with four lively children, now all grown and living their own stories and adventures. So, I am an ‘old doc’. Class of ’83. (For our younger readers, that was pre-computers!). I have lived my married and medical life on this rich prairie soil.
I have worn three coats in medicine: working as a family physician (loving the womb to tomb spectrum), as an oncology associate (loving the internal medicine challenges and “medispeak” translation I was able to provide to patients/families), and as a palliative care physician (loving the return to whole person care). My awareness of the need for hands-on Hospice care was very limited until my work in oncology. I wonder if many acute care physicians are in the same situation – often seeing a cliff for their patients to ride over when we speak of ‘palliative care’. I now know so much better how the last seasons of life can be filled with rich reflections, love, and goodbye preparations.
Christians have long been the heart and hands of palliative and hospice care around the world. Historically, hospices were well known for providing rest, nourishment, and help to worn-out sojourners or pilgrims. Hospice care arose in the late 19th century with nuns choosing to provide similar care to those traveling towards a foreseeable death. This was hand, heart, and soul care. And then came the blend of science and hospice in the 1960s. St. Christopher’s Hospice in South London was born of the vision and inspiration and hard work of Cicely Saunders, a nurse turned social worker turned MD, to effect the change she wanted to see in her world.
Our own Canadian palliative care was a transplant in the mid-1970s of students of Dr. Saunders. We chose an embedded approach and location within acute care facilities and coined the phrase ‘palliative care’ rather than hospice. Inspired by the heart, hand, and soul care demonstrated by such palliative care units and wanting a more home-like and less hospital-like experience, hospices have been birthed and sustained across Canada by local communities in a both/and system in many centres in the past 25 years. Always at the core have been local champions to take on the establishment of local hospices. And thus, it has been in Saskatoon.
Saskatchewan is a province of over one million people. We have a typical Canadian
scattered population and geography. As most clinicians know, end of life care too often happens in sterile acute care settings with inadequate space, often far from home. Hospitals are designed for ‘fix-and-cure’ medicine. Opened in 1990, Saskatoon’s 12 bed inpatient PCU (palliative care unit) meets the palliative needs of patients and families of a wide surrounding catchment area of 400,000 people. Our PCU has cared for over 250 people per year ever since opening. However, the wait list time is often long and the length-of-stay is short. And it is in acute care. No green space. No sun on your face. No windows that open. No expansion of beds in 30 years despite our changing, aging demographics. A wise nurse I know says great palliative care happens when people can receive terrific care in their own home postal code, the right care for the right person in the right place.
So, as a province, we are late to the hospice vision of care. Regina (our sister city) has had a faith-affiliate, long-term-care-attached 10 bed hospice for many years. But that was it for a province of over one million people. Community advocates and committees have dreamed, discussed, and advocated for a Saskatoon hospice for the past 20 years. I sat on some of those committees. But the conversations didn’t result in organized, sustained fund-raising plans or efforts. Everyone involved easily recognized that hospice care is the ‘right care’ for individuals nearing end of life. But discussions were often centered on recruiting government dollars to build. And that just wasn’t in the provincial budget for healthcare. An estimated 400 people annualy face end-of-life in their homes and another 750 in hospital units not designed to support those journeying toward end-of-life in our community.
What changed the game for us? I believe God did – through kintsugi – by demonstrating the broken care in our non-palliative medicine system and envisioning infusing it with gold, silver, and titanium. Being infused with strength, courage, great stories, an organized plan, and a local champion.
Families came forward to advocate for a different way of mending the hard journey of preparing for death and providing dignified care – not in 4-person rooms in acute care medicine.
Healthcare philanthropy is an art and hard work. Hospital foundations do wonderful work across the country. Saskatoon St. Paul’s Hospital Foundation is no exception. The hospital, foundation staff and board dreamed and envisioned for many seasons and then stepped up to champion a “Close to Home” hospice campaign 6 years ago. An ideal quiet neighbourhood site was scouted and purchased on faith at a negotiated reasonable price. Three separate design sessions followed with representation from many – patients, families, nursing, therapies, social work, architects, physicians, dietary, security, OH&S, infection control, finance, IT, etc. The on-site dreaming and planning energy was so exciting.
Next, the campaign leaders quietly advocated to our elected provincial government members to commit to an ongoing basic operational budget. Hospice care usually costs half of what end-of-life care costs are in acute care. This step was essential to ensure ongoing functioning dollars for demonstrated basic health care needs of so many.
A ‘case for support’ was formally developed and a survey of known and interested philanthropic givers was done by a third party to measure the community appetite for a Hospice. The interest was high and willingness to give was deemed a ‘go’. Next, the campaign moved to a public phase to stir the hearts of Saskatoon residents to generously give to build the Hospice. Construction proposals were solicited. A short-list followed with interviews and the chosen firm named. I am very grateful for our construction team commitment to this project! Architectural wisdom and advice continued throughout the entire building process, which took less than 2 years – in a pandemic! An amazing Project Manager was chosen. Advisement committees (building and medical) were established. And the campaign and construction were off and running.
One of the first champion donors (who wishes to remain anonymous to this day) was moved after hearing the story of a courageous young family man with aggressive, life-limiting cancer. The patient longed for his wife and teenage children to have a place to be with him to the last of his life. He wanted his family to be cared for at the same time as he was. He knew that Hospice care would be a gift to his situation. He volunteered to have his story made public. His family graciously agreed. The story-inspired donor provided a campaign-launching gift of six million dollars! I thank God for this generous donor to this day.
And other stories came forward. Other families agreed to share their good and not-so-good experiences in care for their loved ones requiring palliative care. The phrase ‘too little too late’ was an oft repeated, difficult story. Our 12 bed PCU provided great care but was hard to access. A talented local musician, Eileen Laverty, wrote a theme song called “Close to Home” that beautifully captured the spirit of the campaign. Thank you to all those who shared for their deeply moving stories and talents. Throughout the process, the community was behind us!
A campaign cabinet was created and possible conversations-to-be-initiated were thoughtfully reviewed. As with all philanthropy, donors needed to receive excellent information as to the need, the project, and the projected timeline to decide if this would be a project that they would like to be involved with. Gifts were often received in 3-to-5-year commitments. Local businesses were approached and came forward to generously donate ‘gifts in kind’. Small, large, and all-sizes-between gifts were invited and received. Every gift did matter!
God moved the fund-raising dial faster than our campaign and hospital foundation team imagined. An initial 12 million dollar campaign became 15 million dollars and then expanded to 20 million dollars as the obvious generosity and belief in this project evolved! Having the ability to establish ongoing holistic care, not just physical and medical care, for patients and their families was very important. The right care for the right person at the right place. Kinstugi.
The campaign was structured around four pillars:
Building the physical hospice.
Establishing an endowment for ongoing holistic care with music therapy, spiritual care, art, and writing opportunities for those wishing to engage in such activities. (We hope to extend this care out into the individuals at home as COVID-19 restrictions lift.)
Obtaining funding for needed renovations to our 30-year-old palliative care in-hospital unit. The PCU and the Hospice are extensions of each other and palliative homecare in providing palliative care in our community.
Establishing an educational fund to expand the knowledge of excellent medical palliative care in acute care medicine and to continue to update skills for the staff on the PCU and the Hospice, and in home care.
We chose to plan for 15 beds over two floors, given the palliative care needs within our local health care system. Our two-floor construction allows for that non-institutional feeling. Common shared areas are in the centre of the Hospice and patient care room and each floor has spa rooms are on either wing of the building. Patients are so grateful for the ability to have jacuzzi tub soaks and often rest better and require less analgesia on their bath days.
The building was architecturally designed with stunning windows and light, and flooring and wall coverings that are medical grade but beautiful. Ceiling tract lifts were fund-raised for and installed in each patient room. Small fireplaces were installed in each patient room allowing for temperature warming and ambiance. Built-in cabinetry allows for great family photo or personalized art and memento displays. Each room has a window that can open. Bed and wheelchair access to the outdoors were a planning priority. High grade hospital beds were researched and purchased. Initially our budget did not include oxygen and suction (planned use was for portable machines if required) but consultations with other hospices led us to extend the fund-raising budget to allow this installation in the building stage. The connectors for both are in small disguised wall cabinets. Thus, the room doesn’t have an immediate medicalized look. O2 portable machines are still a mainstay when required.
A prairie agriculture theme was chosen for donor recognition room-naming. A commercial kitchen was designed in the lower, non-patient care, floor and the gracious kitchen staff adapt food preparation daily to each patient’s likes, dislikes, and intake ability.
The front entrance opens into the heart of the Hospice home – the kitchen and living room with a front patio area access. It is like our own homes would be, with an entrance that is warm and welcoming. A shaded back barbeque patio area with adjacent fresh air space is to be completed this spring. A second-floor glass-protected shaded patio is available for family to use in the spring-summer-and autumn also.
In our design stages, major faith groups were consulted to ensure we were considering respect and welcome for all. A south-facing multi-faith and event room has a sunny private walk-out and roll-out patio that is to be further developed this year. A smudge and pipe ceremony space was strategically planned and placed; cupboards for sacred objects for faith groups were installed to allow for on-site storage; IT access was specifically planned and installed; and a foot bath was installed in our multi-faith room. In the planning, hopes for this space were multi-faceted: quiet reflection faith space or more jubilant gatherings for birthdays, weddings, anniversaries, family suppers, music events, teaching sessions, or support groups.
In balancing budget needs and space, patients and family areas were prioritized; nursing work spots, team offices and staff areas were simplified and are quite snug. Our team have adapted with great servant-like attitude. There is little storage area within the building.
We are looking forward to being able to share together the common areas and patios in Hospice as we move into living with COVID-19. It has been challenging with the screening processes and visitor limitations that we have had to implement throughout the waves of COVID-19. We also look forward to being able to share greater hospitality with family and other visitors at the Hospice at Glengarda in the seasons ahead. We have not been able to implement a volunteer team during the pandemic, but look forward to this happening soon.
I would be amiss to not include that there were many discouraging setbacks along this fundraising, Hospice-building journey. The building site had more unforeseen issues than were initially known. Constructions costs were an ever-moving, mostly upward, target. Delays with COVID-19 and other issues were difficult, such as how many workers could be on-site at a time; obtaining materials in a timely way; city permitting delays; challenging melding of a significant renovation with a new build project; and unforeseen delays with sub-trade availability in a pandemic. Budget and blueprint revisioning for cost-saving happened on numerous occasions. Deficiencies since opening the facility have cropped up and are being addressed. Highly mobile, delirious patients are a challenge with our staffing and physical set-up. Despite these, the Lord continued to help the builders to build this new house for hands, heart, and soul care.
Our doors opened in January 2021, with a gradual transfer of patients over many long stressful weeks. Single site staffing restrictions made staffing adequacy uncertain. PPE (initially full PPE with masks and face shields) and staff, patient, and family testing and screening has been (as with all of health care) tedious and exhausting. Our envisioned Hospice welcoming care is yet to be fully realized.
Our team is forming a warm and generous bond with each other. Our part-time music therapist and artist have enriched the lives of patients with a desire for the arts. Our spiritual care teams visit as invited. All faiths are welcome. There is no charge for care at the Hospice. Anticipated stays are between 6-12 weeks. Welcome baskets and hand-made quilts and afghans warm each room as a new patient is welcomed to Hospice. Staff go above and beyond to meet patient and family wishes. A beautiful example is when a portable doppler was brought in to facilitate an introduction of an in-utero-grandchild. We have budgie birds that can visit patient rooms. To my surprise, many individuals love the birds’ chatter and physical presence. We also have a visiting dog for those who are so inclined. And of course, well-behaved pets are welcomed as members of a loved ones’ family.
From early 2000s conversations of recognized need to the January 2021 opening of the Hospice at Glengarda, this work has been a wonderful gift to the people of Saskatoon, by the people of Saskatoon. It has been an honour to be a part of it all.
I am getting ready to change gears in the speed and weekly time I commit to the practice of medicine. I am reflecting on how I have spent over 40 years in medical pursuit of caring and trying to make a difference. How have I invited God into my hectic days of patient care? Leaning into God for this project has been a great faith-stretch for me. Watching the kindness and generosity of others on this project has been faith inspiring. I believe that God has built this Hospice house to provide loving space for the “broken to be made more whole” in our journey towards eternity.
May the champions of whole-person care continue to take up the challenge of making hospice care a reality in more centres in our country. Without great care options, medically-administered death is often seen as a patient’s only option. God bless those already providing such care or dreaming and planning for this. In Saskatchewan, I am presently aware of four other communities in the planning and designing stages for hospice care. May the stories of their patients and families inspire many to similar generosity. May palliative care be extended as a fundamental health care provision to all in need.