Monday, May 06, 2013

A Sacred Time: An Essay About Palliative Care

May 5 to 11th is National Hospice Palliative Care Week in Canada. As the guest speaker at River Philip United Church on Sunday, May 5, I devoted the service to the meaning and importance of palliative care.
Here is a revised version of my message to the congregation:

On a Wednesday in May, four years ago, I paused outside my father’s room in the nursing home around eight in the morning to gather myself before stepping in for another day of sitting with him. He was dying, having had a bad seizure a week earlier, common on the late stages of Alzheimer disease.
As I stood there, the day RN in charge of the floor appeared at my shoulder and murmured, “It will be soon”
I took a couple of deep breaths and walked into my father’s room to take up my spot in a chair next to his bed, holding his hand.        
An hour later, there was a knock on the door and I stepped around the curtain in my father’s room to find the director of local hospice society standing there. Peter Marrocco was there to speak to me because this was our first day with a hospice volunteer coming in to sit with my father that afternoon.
I told him what the nurse had said and that I had never done anything like this before, been with someone, watched over someone, as they died
“You simply can’t be prepared for this,” he said to me. “You just need to listen to your gut.”
Then he added, “As far as I’m concerned, this is sacred time.”
Peter also assured me that my father was better off in his own room at the nursing home.  
“Your father is surrounded by familiar things,” he said.
And indeed he was: photographs of his children and grandchildren covered the wall, there was a stereo for playing his favourite CDs, birds chattered at the feeder outside the window.
Yet I think Peter Marrocco perhaps misspoke one thing: You CAN be prepared for this, for dying. Not only someone else’s but also your own.
This is what hospice palliative care is all about: transforming what we are scared of into something that is sacred.
What is palliative care?
Gerry Helm is the chair of the Cumberland County (NS) Palliative Care Society and she explained it to me this way: “Palliative care is not about dying, it’s about living until a person dies.”
The purpose of palliative care is to think in terms of “whole-person” health care, to relieve suffering and improve the quality of living and dying. Most people would prefer to die in their own homes, surrounded by the people and the things that area meaningful and important to them, and palliative care is the way to ensure.
But consider this statistic:  In 2010, more than 252-thousand Canadians died and 90% of them could have benefited from palliative care – nearly all of them!
Peter Marrocco’s description of our dying as a sacred time was eye-opening to me, but also life-changing. As the RN predicted, my father died later that day. As I watched my father’s body shutting down, and seeing so clearly the division between body and spirit, I thought to myself, “I will never be afraid of anything ever again.”
Going into his death with a sacred attitude, not scared, changed the entire experience.
This month’s United Church Observer magazine includes a timely feature article by Trish Elliot about death and dying. Ruth Richardson, a palliative care nurse in Ottawa, is quoted as saying, “We need to normalize death and reclaim dying as a special, sacred, wonderful time.”
That’s whole purpose of palliative care: to address the physical, psychological, social, spiritual as well as practical issues, as well as all the needs, hopes and fears that that go along with those. It is done with a team not only of nurses and volunteers but also with doctors, dieticians, physiotherapists; whatever will allow a person to live until they fully as they possibly can.
No one wants to talk about death, particularly their own but you won’t meet a palliative care nurse or volunteer who doesn’t look at you and say, “We all die. There’s no getting around that.
As Gerry Helm said, “If we talk about it, we get rid of the fear around it.”  
In this way, scared becomes sacred. It is a gift you can give to yourself, and to your loved ones. A gift of time and peace and comfort.

I closed my message to the congregation by reading the final stanza of a poem by Mzwakhe Mbuli:
“Now is the time,
To give me roses, not to keep them
For my grave to come,
Give them to me while my heart beats,
Give them today
While my heart yearns for jubilee,
Now is the time...”

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