Pandemic scars at the end of life
How do you restrict family from visiting at the bedside of a child who is dying?
Every day there is someone who is at the end of life and actively dying. This pandemic doesn’t change that simple fact, but it changes the care options.
Last week Christina Sinding wrote a column in the Spectator that pointed put “palliative care investment and priority is more important than ever” and in hospice palliative care we couldn’t agree more.
April 16 was the national day for Advance Care Planning. It is a day to help educate Canadians about the need to ensure you have a substitute de- cision maker appointed to speak for your personal care and financial wishes when you cannot speak for yourself. Sandra Andreychuk, clinical and organizational ethicist, who was a recent expert at our Advance Care Planning event told our guests: “Engaging in conversations with our loved ones about our health preferences is important to gain a mutual understanding of one another. Today it seems even more critical with the recent COVID -19 pandemic.”
A hospice palliative care approach encourages dialogue and planning so that the things that matter most to you are the things that will enhance your end of life care. What we know is that most wishes go beyond medical needs and we know the tough choices that will be made during this pandemic. Andreychuk told our guests: “I would strongly encourage anyone who is wondering about their risk of COVID-19 or how it may impact their health to reach out to your family doctor or health professional to find out more and have a discussion about your health preferences and what matters most to you.” Speakupontario.ca is also an excellent resource to help you get started on your own advance care plan.
As the executive director of Dr. Bob Kemp Hospice, I am witness to the agony this is causing patients, their loved ones and our staff. On any given day in this province there are 400 people living their final days in a small home like setting hospice, like ours at Dr. Bob Kemp Hospice.
On any given regular day things would look and feel very different at the hospice. There would be no restrictions or screening of visitors. We would be offering you so many ways to live your best life. Music therapy, pet therapy, massage therapy, pedicures, hot shaves and supportive care that includes building in ways to be remembered. We might be helping you plan a birthday, wedding, anniversary or celebration of life.
At hospices we know the power of touch and being close to someone at end of life, this is a cornerstone of our work. If you ever doubted how much touch means to our physical and emotional wellness, research studies on bonding and the impact of touching have shown that physical touch increases levels of dopamine and serotonin. These two neurotransmitters help regulate mood, relieve stress and anxiety. Dopamine is also known to regulate the pleasure centre in your brain that is an excellent counter to feelings of anxiety. It should not surprise us then that we need this closeness at end of life and as we grieve; thus the important role of funerals or celebration of life ceremonies and events.
When our team was first informed they needed to social distance from families, lock our doors and restrict visitors, the change was hard.
It was hard telling 180 volunteers they couldn’t come in. Our hospice started from volunteers and relies heavily on them to bring our home to life. It continues to be hard to tell families they have to choose a small number of family members who can visit.
We genuinely feel the pain when a family member says, “how do we choose who can come in?” We are offering others to come visit at the patient window and it is helping but it is not the same.
One staff member said “how can I not reach in and hug someone or hold their hand, it is breaking my heart.” A few weeks ago, I got a call in the middle of the night from a nurse whose heart was breaking. She was begging me to allow one more visitor to come in because the family member was sobbing at the window. How do you restrict children from visiting their parent or restrict family at the bedside of a dying child? These are tough decisions and they cause agony in the hearts of families and our team.
Hospice palliative care workers are doing a great job in very uncertain and tough times. They are grieving alongside families and our team want folks to know the hard choices and sacrifices families are making at end of life during COVID-19. The scars will be hard to mend, but we are here. Our grief and bereavement teams are offering support by phone and online to help anyone in our community struggling with any kind of loss. If you our anyone you know would like one-on-one support or to join a small closed group please reach out to us.