Have you ever felt betrayed by or angry at a health care professional?
Perhaps you thought you were not getting complete information about diagnosis and treatment plans. Or maybe you felt certain aspects of the treatment, diet or delivery of medication could be done in a more effective and less intrusive manner.
Many of us who are caring for the needs of our loved ones, who act as advocates in the doctor’s office, at the nursing station and in the face of home care workers can find ourselves suppressing feelings of anger and resentment.
Both the patient and the caregiver may be reluctant to express concerns. Some simply may not know to whom or how they should put their questions.
For those patients and caregivers these unexpressed concerns can cause anxiety and even conflict with those in the health care community whose very job is make life easier for the patient.
Dr. Kuhl, a palliative care doctor, suggest that sometimes doctors and nurses can be so familiar with certain diagnosis, treatment plans, and even the hospital environment that they fail to take into account the patient’s lack of understanding of processes and terminology.
Ask questions, be proactive in your quest for knowledge about your condition, the diagnosis, the treatment plan and what all of this means for you or your loved one.
Decision making should involve your input. Family and friends can assist you in this endeavour.
Why is it so important to understand what is happening and how? Because Dr. Kuhl’s research has shown him that suffering is diminished by both the patient’s ability to understand his situation and his sense of having some control over the treatment path.
This column is inspired by Dr. David Kuhl’s book, What Dying People Want: Practical Wisdom for the End of Life.
What Dying People Want is a doctor writing about his very human journey through the suffering of the terminally ill and the desired emotional and practical responses from health care professionals. Most importantly, Kuhl addresses situations and how to approach them for best results, always bearing in mind that what the patient most seeks is some sense of control over his life and the treatment of his illness.
I remember it was always a hassle getting out the door on the morning of Chris’ doctor’s appointments. He liked them to be early in the day, I think because he felt best able to cope then–his energy levels seemed slightly higher in the morning, though he soon flagged.
We lived a good thirty kilometres drive through rush hour traffic, and at the end, paid horrendous hospital parking lot fees. Then there were the interminable hallways, steps and elevators to negotiate within St. Paul’s. For Chris, these sessions were exhausting. Near the end, the toll on him was severe.
But he had been treated at St. Paul’s from the night of his very first heart attack, when we lived in the West End five minutes drive from the facility. And in the end, the young doctor who had treated him then became the head of St Paul’s Cardiology Department, and in the years between, he and Chris built up a good rapport.
So David Kuhl’s book, based on research done at St. Paul’s struck a chord with me.
Several aspects of the book appeal to me. Kuhl introduces each chapter with quotes from patients, followed by an anecdote, legend or myth that speaks to the theme of each chapter. He uses his own experiences and those of terminally ill people to illustrate their concerns.
I found it to be practical and profound. Any comments you may have on the book would be appreciated. Just email me at email@example.com
These next few blogs are based Dr. David Kuhl’s book, What Dying People Want., based on his research and experience as a palliative care physician serving at St. Paul’s Hospital in Vancouver, B.C.
A client of mine lost her husband to Alzheimer’s last year. As his main care giver, she read everything she could find about people’s personal struggles with Alzheimer’s. This literary journey hasn’t stopped with his death. In her grief, she continues to read about other families’ experiences and the disease that took her loved one.
I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.
This is her list of titles:
Before I Forget by B. Smith and Dan Gasby.
Come Back Early Today, by Marie Marley, Ph.D.
Slow Dancing With a Stranger by Meryl Comer.
The Long Hello by Cathie Barrie.
To Johnny With Love by Dagmar Christine Albert
My Mom, My Hero by Lisa R. Hirsch.
When Breath Becomes Air by Paul Kalanithi.
She also recommended two books that are fiction based on fact:
Inside the O’Briens by Lisa Genova and
Turn of Mind by Alice La Plante.
Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.
Thanks, Donna, for sharing.
My mother had Alzheimer’s. Well, actually the doctor said it wasn’t possible at that time to distinguish between Alzheimer’s and other similar conditions. This poem is a response to her condition and the research I did at the time. And no, it doesn’t rhyme.
Grasping at Research Straws
Frontotemporal dementia (FTD)
not so innocent as online florists:
scientists redefining quality of life.
A protein—progranulin-necessary to
nerve cell function; to remembering
luncheon dates and appropriate
behavior for same.
Clinical research indicates inadequate
progranulin production’s a genetic
mutation causing FTD.
Too late for Mother. Send her roses;
long-stemmed burgundy petals
peeling down, like the velvet dress
I once found in the back of her closet:
deliciously sexy on anyone capable
of flirtation and desire…
does progranulin or lack of it affect
Initial research may lead to treatment
in time, but Mother hovers nears the finish.
I wish researchers Mackenzie and Feldman
Mothers with progranulin rich minds.
frontal portal into the brain:
sensors removed, wires crossed.
isolation, depression, short circuitry
rerouting synapse to blank space.
gummed up placque, synapse
box cars skidding off the rails.
scientists probe cause and effect:
in effect the brain shrivels
and we die, wandering homeless
in a vast carapace of skin.