When you read the words Palliative Care, what did you think of? For many years of my life, and even my nursing career, I thought of death. And, it might still mean that to you. But I want to share with you some thoughts to help you understand that it can mean so much more to all of us, and that there is a certain peace in acceptance of what it ultimately leads to: End Of Life (EOL) care. Years ago, and even recently, the palliative care team was associated with negative connotations: “death squad,” “doom troops,” the list goes on. Now, we are seeing a shift to a new approach and greater understanding of what these special caregivers can offer their patients, at any age and any stage of disease.
When you think of what your life is supposed to be like, you don’t usually imagine the end of it. You think of all the things you might like to see, or do, and who you would like to enjoy them with. You think of places, people, adventures, food, drink, sunny days, hikes, good books, diplomas. Your prom, your first car, your wedding day, your dream home, your first baby.
But, what if you get through all those milestones and then your first baby, or any of your precious babes, falls ill. As a mom I can guarantee it makes my insides ache with dread just even thinking about it. Sadly though, the parents I work with every day are facing this awful news, that their child has been diagnosed with a potentially terminal illness. No parent should ever have to even imagine what that would be like, let alone live the actual experience. In fact, I’m not sure I would ever recover, but I suppose in the end that is what makes us human: the vulnerability, the tears, the pain of that journey. And, when we are released from that pain, whether as a child or adult, it is death that is both the blessing and the curse of mortality.
Many of the hopes and dreams we have are about quality of life, but how often do you think about quantity of life? How many days, years, and birthdays will we experience? We think of how those days and celebrations will feel, where we will spend them and who we will spend them with. We develop favorite places, foods, pastimes, and treats. Then, when we want to “bliss out” for a bit, we secure our favorites with our dearest people and enjoy them. In many ways, that’s good quality of life is it not? It seems though, as death approaches there is a shift, and suddenly everyone is on a timeline. This is a natural and expected shift, and actually quite appropriate in one way. As death approaches it does become about numbers: how many doses of pain medication, numbers of treatments available, an approximation of time left here on earth. But in that shift to logistics of the days we have left, we sometimes lose sight of the most important part of all, the sharing of the love, laughter, and density of life within them.
Did you know the Irish have an expression used at the time one’s life comes to an end?? It is: “Biseach an bas” and translates to “Wellness in Death” (as shared by an Irish colleague) – those precious moments right before death when people experience a period of alertness, and perhaps a state of no worry, just as they are ready to leave this earth. When we think of wellness, we think of health. But the reality is, if we are considering quality of our life, we should also consider quality in our death, and in the Irish culture they seem to have this figured out. My Irish roots have shown up at both the best of times and the worst of times in my life—from the Irish blessing that my Dad offered at our wedding to the Irish prayers that were said at his funeral. A full circle in love, in life, and in death. My father always told us we had so much to be thankful for, and I think he had it right. At the end of each day, taking a moment to reflect on what it consisted of makes us realize the true beauty that lies within each day of life in our journey here on earth.
Why do we stop thinking that we can live life to the fullest even when our days are potentially numbered? In Ireland, for many, death is the great journey, an inevitable visitor and known to some as the “long rest at last.” For my father, it makes more sense to me; although taken fairly suddenly and definitely too soon, he was an older adult who had lived a very blessed life, not a young child deprived from the journey of life to come. So, how do we as humans, parents, grandparents and nurturers embrace end of life when it begins far too soon?
That’s where the shift has started to happen in healthcare. That’s where good palliative care means leaving prognosis behind, and focusing on the days ahead and the moments within them, specific to each patient’s wishes. It has become known as the Palliative Approach across North America, and beyond. This approach leads us to consider that although there may be months or years ahead in one’s life, we should keep the quality of existence at the forefront of care. What goals in life do they have? For children it may be as simple as one last camping trip, or it may be to finish each day playing a game of chess with their parents. And, what’s more, is that if we are approaching their precious and yet time-limited life with quality in mind…..they could have a year of chess games ahead. Those chess games will be of good quality, special memories for everyone.
Thinking about what a parent must face in the tragedy of losing a child it is nearly impossible to let our human hearts, spirits, and minds go there. How does a parent let go of this precious being, knowing it will be literally another lifetime before they meet again? This is the beautiful gift that bereaved parents offer the world. During their many hours, days, and years of grief that never truly go away they help the rest of the world understand what it means to have empathy, a kind heart and a giving spirit. It is these parents that have helped us understand in recent years how important it was to have had conversations about goals of care for their child early on in the disease process, with team members they had developed a rapport with.
These conversations are not easy, and sometimes need to be broken down into several visits, but what comes from them is the gift of time for these families. As healthcare professionals working with families facing difficult prognosis, we have a responsibility to help them navigate their journey. It is up to us to offer opportunities to talk about the wishes, hopes, and goals of care for their child in safe and nurturing conversations. Then, when there is eventually a change in prognosis for the child, time can be spent with the child comforting and caring for them. Not in meetings about goals of care with the healthcare team. The result is reduced suffering for all as the child will have expert symptom management early on, and the parents will have additional time with their child sharing those precious moments until the end.
So I ask you, who are the people in your life that will lift you up, lock arms with you, and hold your stride during the best and worst days of your life and the lives of those you love. Find them, love them, and don’t fear leaving them. Fill your days together with love, light and laughter, and the transition from the number of days you have to the quality of them will naturally lighten your load, lift your spirits and bring you eternal hope that we are all doing life just the way it was meant to be.
Marjorie McGibbon obtained her Bachelor of Science in Nursing with Advanced Major from STFX University in 2004. Having always had a passion for working with pediatric populations, she began her career in the pediatric specialty of Oncology/Hematology & Nephrology at the IWK in Halifax. After also spending time in the Neonatal Intensive Care Unit at IWK, she moved with her husband to northern BC where her practice involved community pediatrics, public health, general medical surgical, as well as prenatal educator & breastfeeding support roles. Marjorie is passionate about supporting both families and staff caring for children of all ages with life limiting and life threatening conditions, and has recently become a certified trainer in Education in Palliative and End-Of Life Pediatrics (EPEC-P). Marjorie is the Pediatric Oncology Patient Navigator for Horizon Health Network NB and resides in Petitcodiac, New Brunswick with her husband & two children. A true Maritimer at heart, she is happiest playing in the waves of the Atlantic with her family in the summer months, and enjoys hitting the slopes with them when the snow flies!
Marjorie’s partner, Phyllis Branch can be found at Vitalite Health Network in New Brunswick.