Palliative and end of life care gives people and their families better quality of life and comfort during a life-limiting illness—from diagnosis, the time close to death, to bereavement. It helps Albertans meet their goals for the kind of care they want and where they want to get care. The following are stories of how palliative and end of life care is making a difference for Albertans.
The Calgary Zone Palliative and End of Life Care portfolio worked with 5 family advisors to create digital stories sharing what mattered most to them and their family members during the palliative and end of life journey. Using photos, videos, music, and their own voice these 5 family members tell their own unique story. The stories can be found on the AHS YouTube Channel under playlists/ Palliative and End of Life Care
March 29, 2012 started out just like every other day for my husband Geoff and me.
On that day, he suddenly had a lot of trouble breathing and was always short of breath. This went on for 22 months. We were to find out that Geoff had a rare form of respiratory ALS (also called Lou Gehrig’s disease); the type he had paralyses the breathing muscles.
Geoff needed a ventilator to breathe 24/7. He needed medicine and his airway suctioned 4 times a day to bring up secretions that settled into his lungs. He could only eat soft food by mouth. Over time he wasn’t able to do that anymore and needed a feeding tube.
Despite these challenges, I tried to make life as normal as possible for Geoff. Because his breathing machine was portable, I was able to drive us to visit friends and family in California and Vancouver Island.
Geoff became much sicker during our last trip to California. Even with the treatments, his lungs couldn’t clear the secretions. We were to soon learn that he only had about 1 month to live. Even though he couldn’t talk, he used his IPad to tell me that he didn’t want to spend his last days in a hospital: He wanted to be at home with family and he wanted to see his grandchildren again.
With the support of his ALS doctor, respiratory therapist, and the ALS team, I took Geoff home.
The next few weeks were exhausting for both of us, as Geoff rarely slept. Thankfully I had help from family and a health care aide. I call them my guardian angels. Without them, I wouldn’t have been able to make Geoff’s wish to die at home come true.
His last 48 hours were very hard. Because his lungs couldn’t use oxygen well, he became very confused and didn’t understand why he was having trouble breathing. With my healthcare background, his ALS doctors and respiratory therapists, I was able to adjust the settings on his breathing machine and give him the strong medicine he needed to keep him comfortable. This was such hard work but I wanted to do it so I could honor his wish to not go to hospital.
The EMS Palliative and End-of-Life Care Assess, Treat, and Refer Program is such an important program because it helps families like ours keep our loved ones at home, especially when dealing with complex medical needs. They’re only a phone call away and can give you the extra support you need as your loved one’s health fails.
Geoff passed away May 7, 2014 at 8:34 in the morning. I sat by his side as his pulse faded away. It’s something that gives me great peace and can never be taken away from me—that I was able to fulfill Geoff’s wish to spend time with his friends and family in the last few days of his life.
Geoff always had a smile and a hug for his grandchildren. The day before he died he gave each one a big hug, even though he had trouble using his arms. They will have that memory forever. There isn’t a day that goes by that they don’t talk about Grandpa. Because they’re young, most of their memories are from during the time he was sick. But, they are all good memories, including that last hug.
Neal, a beloved member of our family lived with the challenges of Multiple System Atrophy [MSA], a rapidly debilitating form of Parkinson’s Disease for more than five years. Neal and his family enjoyed life and managed at home as fully as his declining physical abilities allowed, due in no small part to support of AHS Calgary Home Care [HC] including the Palliative Team during the final weeks.
The professional, competent and compassionate care our family experienced included and was not limited to:
Excellent communication of information about client/family situation, needs and priorities. The circle of palliative care providers had ready access to detailed and current status and assessments. Our confidence in the recommendations and services offered was boosted by not needing to repeat the same details for each provider and the feeling that the team already knew and understood what was needed.
The Palliative On-call RN used this information and her phone assessment to quickly initiate a palliative team referral. Barely 12 hours later a Palliative Physician and Palliative Care RN arrived for a home visit aided by this seamless flow of information. The actions and care that resulted reduced our stress significantly. Our family felt well supported throughout these difficult times.
The Community Paramedic Service and Home IV Program was an invaluable support. Neal wanted to remain at home. The complexity of his needs and past experience in acute care had taught us that he managed much better at home. The Community Paramedics filled this huge gap, allowing him to receive symptom treatment at home where he most wanted to be. This is client centered care at its best.
Follow up visits and consults by HC’s Palliative team: RNs, Physicians and pharmacists were all delivered with this same client centered approach. To experience their collective skills and expertise collaborating around our family’s kitchen table was amazing. They problem solved ways to give Neal the best quality of life during his remaining time.
Care planning started with conversations with Neal and his family about what it was he wanted for his final days and what he did not. Then the team, the RN, the Physician, his Neurologist at the other end of a phone line, aided by the pharmacy, set to work to make good things happen for Neal and the family.
And they succeeded.
Thinking back over the entire experience, particularly the final weeks and days, as a family we found ourselves saying to others … we could not have asked for the experience to go more peacefully and meaningfully or with more dignity.
Neal was able to be a part of this decision making until his final hours. His wishes were respected and aided by this amazing and compassionate team. And we cannot thank them enough for the care and support we felt as a family.
The wonderful care Kaitlyn got in Edmonton helped her to live well and for much longer than expected.
This is my story about our daughter, Kaitlyn.
Kaitlyn was born on April 24, 2002. Our little family was complete because we had a wonderful 3-year-old son, Liam, and now our beautiful baby girl. Everything was perfect until we received the devastating, heart-wrenching news that our baby had Spinal Muscular Atrophy (SMA) type 1 and she probably wouldn’t live past 9 months, and definitely not to age 2.
Our world was turned upside down. We were told to take her home and love her until she passed away, and give her lots of love. That is exactly what we did. With a lot of research and help and care from Dr. Dawn Davies [of the palliative care team in Edmonton],
Kaitlyn survived and had a great life for almost 9 years. She was a very loving, smart, beautiful young lady and we miss her so much. Kaitlyn was happy to welcome a baby sister named Dawn, and she was so proud to be a big sister.
-Hali and John, Kaitlyn's parents
By Joy Doram
My 40-year nursing career is made up of many experiences—acute care bedside nursing, community care in the home, pre-op surgical educator, transition nurse, as well as geriatric consultant. All of these have prepared me for my most rewarding and challenging role as a palliative nurse consultant.
In this role I care for the patient’s symptoms, emotions, and spiritual well-being. I also support family members who are caregivers.
One of my patients was a young mother from the Philippines. She was working to support her family to come to Canada, including her 3 teenage children so they could have a better education. Her spouse was suffering from Parkinson’s and couldn’t work. When this woman was diagnosed with a very advanced cancer and was no longer able to work, the care team and I tried tirelessly to get her back to the Philippines to be with her family and receive hospice care before she died. But we faced many challenges (there is no universal health care in the Philippines), and by the time the arrangements were finalized, she wasn’t well enough to fly. But this young mother was so grateful for our efforts. She died in the Palliative Care Unit, with her brother by her side.
Some people ask me if my job as a palliative nurse consultant is depressing because of all the sadness and grief. But for me, it’s an honour to walk with and support patients and their families through the unknowns of serious illness. It’s an honour to be with them and help them, and give my compassion, respect, and understanding as they get closer to death.
I first met Linda, her eldest daughter Annie, and the rest of the family when I came to provide respite for Annie. Annie was struggling to get through University exams and care for her mom at the same time. Linda’s husband worked long hours, and her son was getting ready to leave for University in another province.
Many times I would arrive and Annie was in her pajamas, just home from a full day of classes, exhausted. In getting to know Annie, I learned she loved shoes and interior design and many of the same TV shows. We’d sit with Linda and chat about the latest plot developments, food, home decorating, job interviews, and school. Not too long into our visits Annie would excuse herself for some personal time.
Linda and I would read books, watch TV, or listen to classical piano playlists. We’d laugh when her mostly grown son ran down the stairs, his weight and speed making the walls shake. She thought it was hilarious how loudly my knees crack when I crouched. Sometimes, on bad days, I would find a reason to reach for something under the bed just to make her smile. I would give her hand a rub, fetch her water when she was thirsty, and try to make her as comfortable as possible. We’d spend time going through photo albums together. She’d pick her favourite pictures and I’d tape them to the wall. Eventually we had a mural stretching over 2 bedroom walls!
There were hard days too. Linda was sad when her son left home. Too, there were days when her physical situation would be overwhelmingly real to her and we would sit in silence, her eyes squeezed shut, me holding her hand. There were episodes that left everyone shaken and exhausted. Those were the days I would get in my car afterward and cry: It was hard knowing that these episodes happened even when I wasn’t there and Annie had to manage alone.
I visited with Linda for almost 10 months. Although she was never able to speak a single word, we became very close friends, and she taught me a great deal. From the beginning of our friendship I was gifted with the freedom to assume only the very best about Linda. This in turn gave me permission to be my very best person.
Being with a person who’s dying lets you focus on what’s important, not the “noise” or the drama. It lets you bring your very best to the bedside. There’s room only for compassion and love. This is the greatest gift the dying have to give.
While I’m so sad that Linda is gone, I wouldn’t have missed getting to know her, or her family for the world. Today her son is enjoying success at school, her husband’s learning a new hobby, and Annie and I still stay in touch, bonded by the gift.