The World Health Organization defines palliative care as “…an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems.”
There are other definitions and interpretations as well, generally relating to ‘end of life’ care for those no longer being treated for the health issue that has been causing their decline.
But to cut to the chase: palliative care is about the process of dying. It’s the kind of care we give to those who will never be better, and the kind of care process we strive to offer family members who will inevitably suffer as a result.
Been there three times
My wife’s father died in 1997, latterly battling bone cancer. The decision was made—because Gail and her brother knew exactly what their father’s wishes were—to keep him in his home with full time care, medical attention, and all the possible comforts needed. He slid slowly but surely downward and died, but it was with dignity and in a way he wanted and the family supported.
My father, into his 99th year, one day simply didn’t get up in the morning. While he spoke very little with me at that point, it was clear he’d decided that his life had been lived long enough. We did discuss medical intervention, about being hospitalized, and it was abundantly clear that he didn’t want either.
For several months, we watched in pain and trepidation as he stopped eating, refused to take medications or drink even water. We consulted with his family physician and it was agreed to place him in a palliative care mode. He had around the clock care, three times a week additional help with shaving him, catheter replacements, and such. Weekly, his doctor would check on him, as would his clergyman. I was there virtually every day, too.
Some wanted him to be hospitalized, but my feeling was that there wasn’t anything more that could be done for him there. On the contrary, given his condition, age and the course of events, I felt being hospitalized would actually be a detriment. Eventually, some others wanted him tube fed. My question: why? Would it make him better? The answer: no. Tube feeding would be for the benefit of no one other than me, because I would have my father alive longer. It certainly wouldn’t benefit him. He was, however, on a saline drip all of the time. And after three months of intense, delicate care he died in his sleep.
My mother had been in a nursing home for some seven years, withering mentally away with some form of dementia these days all too easily categorized as the dreaded Alzheimer’s disease. Compounding her condition was a slowly escalating level of diabetes, several mini strokes that collectively took yet a greater toll, two serious bouts of pneumonia, and a few other more minor ailments. All this amounted to having a mother nearing her 97th birthday no longer interacting with or reacting to anyone or any stimulus. It was like watching someone who really looked like my mother, but who just wasn’t really there anymore.
So one and a half years ago in consultation with the nursing home staff and visiting physician, we agreed that moving her onto a palliative care footing was the most caring, humane thing to do. That meant discontinuing her medications, and then her food, which she wasn’t eating anyway. We ensured that my mother remained hydrated, and as needed given medications for any possible pain she might be having. She was seldom alone as care teams from the nursing home and those we had in place worked together to be with her, and I was there most of the time along with some of my family.
My mother died in her sleep in February 2011.
The importance of proper planning for palliative care
As an end-of-life option, palliative care can be a profoundly important undertaking. When considered and thoughtfully embraced, it can be an incredibly comforting experience for all those involved: the dying loved one, you, and your family and friends.
First, there is the choice of setting. Where is the best place for your dying loved one to be? What location, elements, and supportive ‘props’ are going to give that parent the most comfort: physically, psychologically, and spiritually?
Then, there is the matter of the level of medical intervention: will it be some, light, low, or none? You need to consider the impact of each level and how you will adjust the level to the need of the moment. This is not an area for being stubborn or entrenched. It’s where you have to think of the needs of that loved one, and weigh and consider the advice of health professionals, and always remember that this all about your loved one, and much less so about you.
As well, there is the need to strive to connect, in a most gentle and caring and respectful way, with your parent during this process. I personally believe that an aging parent or other loved one may well feel, sense, or even in some way comprehend what we are saying or doing while around them. That’s why stroking arms, speaking softly about past pleasant memories, just holding hands quietly: all are very important messages to share.
And we—you, your family and others who are involved—must have counsel and support to help us through what is a very challenging and difficult, yet also amazing and loving time. It’s wise to have experts in palliative care explain the process at the outset and be involved along the way to offer observations and appropriate reinforcement.
I know from personal experience that there is both pain and comfort, both sorrow and joy on this journey of palliative care. It’s nothing we prepare for, and it’s nothing we’ll ever forget. What perhaps it is, from a personal perspective, is an odyssey to a place that’s very private, very sacred, where for a brief while we relive lives, and then, now less reluctantly, lose one who for so long mattered so much.
For more information on eldercare visit: www.mycarejourney.com