What inspired you to start working in palliative care?
I always had an interest in the way people died, even when I was young. When I saw both my parents die very different deaths in hospitals, one who was in denial and one a sudden death, I thought as an ICU nurse, there had to be a better way. I explored the topic and applied to work in palliative care at the Royal Victoria Hospital and really learned what palliative care was and how to make a bad situation good. For me, an ideal death would be either in hospice or at home, comfortable and surrounded by family. Wherever there is a dedicated palliative care team, there is good symptom management. I like the fact that this gives people a choice- whether to be at home, hospital or hospice. And I thought to myself, why isn’t everyone choosing this? It would have made a huge difference to my own family. I thought that everyone should have this amazing option, but no one wants to talk about it until they are placed in the situation.
How would you describe the ideal patient experience at the West Island Palliative Care Residence?
The perfect experience would be to give the patient as much time as possible, free from pain and have any other distressing symptoms well-managed. The patient can then spend quality time with his/her family, while having enough time to say goodbye.
What does the palliative approach to care mean to you?
The palliative approach really is to focus on the quality care rather than the quantity of care, since quantity is a by-product of what time is left. In some cases, it may mean the end of curative treatments, and that may or may not shorten life. And now we have research that shows that palliative care given early in the illness trajectory can prolong life! The palliative approach gives the patient choice and control over his/her end of life journey. A lot of this has to do with having early and frequent conversations with family or substitute decision makers and following through with the decisions made. I had a chronically ill family friend who survived CPR only to be placed on life support and die two days later. They’d had a conversation about resuscitation but didn’t know how best to respect the patient’s wishes. It’s important to begin conversations with family and also have them understand what the consequences of taking a particular decision (like agreeing to CPR) means. We need to have open conversations around end-of-life care decisions. The decision to take someone off life support is really hard for family members if they don’t have the proper guidance. Decisions may change over time, particularly as the disease progresses, so these conversations may be ongoing. The health care professionals need to be educated on how to have these conversations often and early – and many topics need to be covered such as who needs to be there, finances, and who will do the actual physical care required, etc. These topics can be taught as early as high school – we all have to think about death at some point – so let’s normalize it and make it a part of a regular conversation.
Have people had these conversations?
Patients are usually so sick when they arrive in our hospice that they’ve usually had the conversations already. We do sometimes have to explain simple things, like loss of appetite at the end of life. The majority of our hospice patients are well-prepared- usually because someone on the health care team thought enough to have the conversation before the person is admitted.
What is the typical length of stay?
We have 2 different in-patient units and the mean length of stay is about 20 days. Some patients stay hours and some stays for months! One person has been here for 10 months. Prognosticating patients is sometimes difficult. You never know, with really good palliative care, some patients even get discharged. Patients are well cared for, participate in light social activities, receive counselling and are offered art and music therapies. We discharge about 10-15 patients per year! This can happen because sometimes when a patient is admitted, it looks as though he/she is dying, but it turns out to be an acute, reversible condition and then the patient stabilizes. It really shows what good palliative care can do.
What can we do to raise more awareness for palliative care?
I think people need to try and have open conversations about death; it’s good to speak up when the opportunity presents itself. I always continue the conversation when people ask me what I do for a living. The conversation can begin simply in a social environment, or via word of mouth or in a classroom. I get requests to teach in nursing schools or give information sessions on palliative in area churches, libraries or social groups. I agree to do it because I will have a captive audience and in some cases, it gives me an excellent opportunity to reach the people who may be taking care of me one day! I’ll talk to anyone who will listen! We don’t need to fear death, it’s okay to die.
At a national level, I tell people to write to their local newspaper when the topic comes up and tell them their experience. Don’t stay silent! Take any opportunity you can, reach out to companies and government. We also find that through working with so many families, they become the best advocates for palliative care. The more we make it accessible, the more people will talk about it. It is an opportunity we all need to seize, and I think the next generation will be more comfortable with social media and interacting at a global level.
So at the West Island Palliative Care Residence you say – “We can add life to days, even if we cannot add days to life,” what does this mean to you?
I think it’s important that we focus on quality – if we go with this philosophy it’s a good start. We may lengthen life, but we are not curing. Palliative care is not giving up; it just means you stopped fighting the disease. There is still life left to enjoy.
For more information on the West Island Palliative Care Residence, please visit their website at www.wipcr.ca.
Rose is the Nursing Director/Assistant Executive Director of The West Island Palliative Care Residence in Kirkland, Quebec. She has worked there since it opened in 2002 and previous to that was the Clinical Nurse Specialist on the palliative care team at the Royal Victoria Hospital. Rose manages the inter-disciplinary team at the residence. She educates and sensitizes the community to better understand what palliative care is. She is the recipient of the 2009 Award of Excellence from the Canadian Hospice Palliative Care Association (CHPCA). Recipient of the Diamond Jubliee award, Rose is an active member on the Canadian Nurses’ Association hospice palliative care certification exam committee and is a past president of the CHPCA nurse’s group. An adjunct faculty member at the McGill University School of Nursing, Rose graduated from there with her Master’s degree in 1995. She has presented at numerous local, national and international conferences on palliative care. She thoroughly enjoys the challenges working with terminally ill patients and their families.
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You can read all the articles in this series from the other editions of ehospice by clicking on the links in the related articles section.
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