Hospice is a scary word and what does palliative really mean?
Many people associate Hospice only with death and dying, but those that work in hospice palliative care know it is actually about comfort, wishes, and compassion.
Hospice is both a place and a way of thinking. Yes there is a two bed Hospice in Barry’s Bay that provides families a safe, private and homelike setting to spend those precious last days and weeks, but hospice palliative care is a philosophy devoted to quality of life up to the last breath for the dying person, and beyond that for the grieving loved ones.
Like most people, one does not really have a full appreciation for hospice palliative care until you need and experience its benefits.
Lucy King and Barry Goldie did utilize hospice palliative care services both, in their home and in the last weeks, in the Hospice Unit in Barry’s Bay. When Lucy was asked why Hospice is such a scary word for many, she answered, “Because they are afraid of death and people don’t have a comfort around death in general and hospice represents the end of life to people. They don’t think of it as a nurturing environment as I have”.
When asked why palliative care is important and when should you seek a referral, Lucy says, “Sooner than later! People have commented to me – doesn’t that mean we are giving up? I always say to them from what I have learned, it’s absolutely not giving up. It is proactive because the end of life is going to come eventually and everything you can do to make that experience as positive and as comfortable as possible is the focus of hospice and the earlier the better for the staff of hospice to understand your needs.” Early referral does not hasten death and studies have proved actually the opposite.
Palliative is a tricky word to understand as palliative care can begin when you have a life limiting diagnosis and includes caregiver support, resources, clinical supports, health system navigation, maybe a hospice admission at end of life, and grief support for loved ones. It is an extra layer of resources and expertise, tools in the tool belt for what is ahead, for families to get what they need when they need it. Many people are seeing specialists, receiving interventions and curative treatments, while accessing palliative care. Many primary care providers understand the benefits to patients and refer, but people can self-refer for assistance.
When discussing goals of care with Barry and family, Lucy would refer to the hospice unit as a home away from home. They decided to remain in their home as long as possible and said from the get go when Barry’s care was beyond Lucy and family’s ability, they would go to hospice if a bed was available.
Prior to admission to the Hospice Unit, Lucy and Barry received support in their home but not supports throughout the night. “When we came here it was the biggest shift in terms of actual care because it wasn’t all on me. It is a home away from home but so enhanced because not only do you have the comfort measures of the home but you also have all the expertise at your fingers tips from the nurses, PSWs, hospice staff and all those wonderful volunteers. Everybody is clearly on the same page to make you feel at home and comfortable.”
“From the minute we walked in here, the kids and I all breathed a huge sigh of relief that now we could focus a little more on just loving and being with Barry appreciating all the time we had and not be on edge trying to take care of his every physical need. We could attend to his spiritual and mental and emotional needs – it was very freeing to do that. I realized after I got here how stressed I was. I was worried can I manage this? How bad is this going to get especially at night not being able to sleep enough.”
Lucy King has been a hospice volunteer for Madawaska Valley Hospice Palliative Care (MVHPC) for several years. Now on the other side of that care she shares, “I was impressed by the whole team. Everyone wanted to make our experience as positive as possible for us. For the most part, I was listened to and at times challenged, which turned out to be a good thing. The entire team has a very cohesive focus on comfort and respect”.
Hospice palliative care is about quality of life and supporting the things that bring joy and meaning for the dying person and their loved ones. Lucy reminisced that Barry loved a rum and coke each evening about 4 o’clock. His son brought in a well-aged rum for his father to enjoy. When he could no longer drink from a cup, he dipped a toothette, used to moisten lips and mouth, into the drink and Barry loved it. “It was fantastic”, Lucy laughed. She noted that her family was relaxed and comfortable in the space from the beginning, despite the layers of Covid protections.
Lucy wants to recommend that if you are dealing with a life limiting illness, connect with MVHPC services. “Do not be afraid. When you make the choice to connect to MVHPC for help, it is a very positive choice and not giving up. You are deciding to be very involved in a supportive healthy process and healthy death. “
To connect with MVHPC, call 613-756-3045 EXT 350 or online www.madawaskavalleyhospicepalliativecare.com