After waiting for two days for a hospital bed she was admitted, assessed and eventually her condition was declared palliative. Although I was in considerable shock when meeting with the care team that delivered this information to me I knew that this was the inevitable truth – she had fought long and hard and now somehow the fighting was over.
I was given the choice of moving her to another facility for palliative care or to hospice or she could remain in the hospital where she was and be moved to their palliative care unit, which is the option that I chose.
From the moment that she entered the unit it was as if we had entered another world. The corridors were clean and quiet and the walls were full of uplifting works of art. The nurses were calm, respectful, patient and cheerful and went about their job with a sense of quiet purpose. Although busy, they always seemed to find time to answer a question, provide information and offer reassurance. There was a family lounge that always seemed to be well stocked with coffee and tea and daily fresh baked cookies provided by volunteers.
What surprised me about this experience was that in spite of the inevitable outcome, it was one of the most powerful and positive experiences that I have ever had in a hospital. The reason for this, I later realized, is that the job of the health care providers in palliative care isn’t to be curative and to help patients heal sot that they can be discharged from the hospital at the earliest possible moment in order to make room for others. The nurses are no longer focused on the numerous demands of looking after patients that are required for curing, but they are focusing on what nurses do best – caring.
And even if the caring also requires complex nursing skills – many palliative patients have complex health issues – their focus was on providing the best possible end-of-life experience for their patients and their families. Interventions were for the sole purpose of providing comfort and pain relief. They also were highly skilled at interpreting the signs of distress or discomfort for patients who were often incapacitated to speak for themselves or family members too overwhelmed by their own grief to think coherently.
They provided support and coring for not only my mom but for her family members who were always kept in the loop and up to date on her progress. It’s funny to think of dying as a progression but indeed that is what it s. These palliative nurses have seen a lot of dying and instead of seeing it as a failure, as it might be on any other hospital floor, in the palliative unit it’s considered normal – no one to blame or fault – just a very real and natural progression in life.
Years later I found myself wanting to volunteer at a hospice in my community because I really felt blessed by the wonderful job that the volunteers did when I was in distress. I also wanted to support this great movement which offers end-of-life care to patients and their families in a supportive non-clinical setting. Although hospice is gaining popularity and momentum in Canada, Government funding has not increased proportionately to meet this demand. As the Canadian population is aging, the Canadian Hospice Palliative Care Association estimates that over the next 40 years demand for hospice palliative care services will also dramatically increase.
Some families will choose to care for their loved one or family member at home throughout their illness. Although this may seem like a very daunting undertaking, many families feel that they can manage because of the support and respite that they receive from the local hospice palliative care team.
It’s really about knowing your options and about choice. No two people or family situations are alike. The Canadian Hospice Palliative Care Association (CHPCA), in collaboration with the National Advance Care Planning Task Group, recently launched a campaign to help Canadians begin a conversation about their wishes for end of life care. The “Speak Up: Start the conversation about end-of-life care” campaign includes a website www.advancecareplanning.ca that provides a number of valuable resources for Canadians, policy makers, health care professionals and community organizations to discuss these issues in greater detail.
They also recommend that families begin a conversation about advance care planning. Advance care planning means making decisions with your family and friends, especially your substitute decision maker – the person who will speak for you when you cannot. It could also include writing down your wishes, and may even involve talking with healthcare providers and financial and legal professionals. The website mentioned above has numerous resources to get you started. SO start the conversation and help bring end-of-life care out of the shadows and into the light.
Article original appeared in Hospital News in April 2013.