A Little Health Care Advice for Today’s Patients
Alice Little retired from teaching more than twenty years ago. Since that time she has learned some important lessons about the Canadian health care system. Her patient experiences run the gamut from serving time on waiting lists for surgeries to surviving terminal cancer. Like many senior citizens in Canada, she worries about the state of palliative care in hospitals and is determined to maintain her independence.
Today at the age of 81, Alice lives in her own apartment in Winnipeg, Manitoba, with home care coming in to help her five mornings a week. She keeps a watchful eye on provincial and local health care issues.
“Rain or shine, winter or summer, I go on a scooter to ethics seminars, medical talks open to the public, legislative sessions and in delegations whenever possible, although in the latter case my reputation precedes me. I am never discouraged,” says Alice.
She is wise to the ways of our health care system and isn’t afraid to speak her mind about it. In the mid-90′s after spending over two years on the wait-list for a hip replacement she turned to local media and received a surgery date soon after her story appeared on television. It was the first of many lessons to come.
In 2005, Alice reviewed her medical records following what she believes was a misdiagnosis leading to an unnecessary hysterectomy and, ultimately, to the removal of a cancerous kidney. She expressed a number of concerns about her medical care in a letter to her treating physicians, the CEO of the hospital, the regional health authority and the minister of health. The health region’s response included an invitation to join its newly formed Patient Safety Advisory Council. Alice viewed it as an opportunity to help make improvements to the health care system and save other patients from experiencing similar situations. She joined the council and began devoting her time to numerous patient safety meetings and conferences. Contributing her knowledge and talents towards greater education and awareness on the subject made the former teacher very happy.
Over the next couple of years she would learn that sharp minds and tough questions were not always welcome at the patient safety table. The health region dissolved its patient council in 2007 and has since replaced it with another patient safety initiative.
“I came to the conclusion that patient safety, outside of individual hospital efforts, is mere window dressing as phony as a three-dollar bill,” says Alice.
Less than two years had passed since the removal of her cancerous kidney when Alice was informed in February 2007 that a recent CT scan showed cancer in both of her lungs. Three months later, an oncologist offered her chemotherapy treatment for what he labelled a terminal and inoperable cancer. After reviewing some of the common side effects including vomiting, diarrhea, hair loss, itchiness and bleeding of the gums and mouth, Alice quickly decided thanks, but no thanks. She accepted the grim diagnosis but wasn’t willing to take on additional side effects from the treatment.
“I believe people have a choice and, especially in senior years, if this cancer is slow-moving why destroy the immune system and be sick for one’s remaining days on earth? Get busy on the bucket list,” says Alice.
Instead of taking chemotherapy she hosted a party to celebrate her life and then spent time travelling in North America and abroad. That was over four years ago. Alice will celebrate her 82nd birthday in November of this year.
“What would I say to a patient today?” says Alice. She offers this advice:
- Insist on a second opinion.
- Insist on full disclosure of all known eventualities and be sure home care is in place.
- Develop a good measure of doubt and distrust but be grateful and praise when the situation warrants it.
- Trust your own judgment and your own feelings about your own body.
- Tell them, if necessary, to wash their hands, not to play God with you and let the chips fall where they may.
- Establish yourself as a force to be reckoned with and, if possible, take another knowledgeable person with you.
- Ask to see your medical files and have copies made.
- Expect to be turned away and even insulted by some in high places, but persevere.
- Try to work in some form of patient safety and advocate for patients whenever and wherever you can – go political too and good luck!