Healthy Skepticism International News
June 2010
Our Mom’s Story
By Johanna Trimble
Johanna Trimble tells the story of how her mother-in-law’s health deteriorated when she was put on many medications but improved when her health professionals agreed with the family to try a drug holiday. Then her health deteriorated again for other reasons also associated with the quality of professional care. Johanna is a member and office holder in both Patients for Patient Safety Canada and Patient Voices Network in British Columbia.
Our Mom (my mother-in-law) was an intelligent, perceptive, down-to-earth and aware woman much respected and sought out by younger family members for advice and the pleasure of her company. Except for occasional forgetfulness, she had no signs of mental decline. In 2003, at the age of 87, our Mom was admitted to the Health Centre (hospital-like setting) of her senior's residence. She had lived in her own apartment at the residence for many years, taking part in the community and surrounded by friends and her own belongings. We did not get a clear answer from the medical staff what the problem actually was. She woke up one morning and knew she couldn't stand without passing out. She had had some pneumonia. She had also been on rofecoxib (Vioxx) and complaining of diarrhea for a long time. Perhaps her electrolyte balance was upset.
Johanna Trimble and her mother-in-law Fervid Trimble
However, her status declined severely after admission to the Health Center of the residence (hospital-like setting). She was put on several new drugs. Three of them were anti-cholinergic. As well, two different SSRI antidepressants were tried. Our opinion was that she was not depressed, but instead she was in mourning with the realization of giving up her apartment and being ill and confined to her bed. Nitrofurnatoin (Macrobid), an antibiotic the World Health Organization recommends NOT be given to the elderly was prescribed for a urinary infection. As well she was given the pain drug tramadol (Ultram) along with acetaminophen (Tylenol). Tramadol (Ultram) is specifically contraindicated if taking SSRIs because of Serotonin Syndrome. Our Mom and was taking several drugs associated with this syndrome. Within weeks our Mom had developed several of the 10 symptoms of Serotonin Syndrome:
* Mental status changes, delusional, couldn't tell dreams from reality
* Agitation
* Often “sleeping” and difficult to rouse, not like a normal sleep or nap
* Repetitive movements of her forearm
* Sweating
* Episodes of rapid heartbeat
* Lack of coordination
She was now on 9 drugs in total and we were told, “this is not very many”.
All of these symptoms started after admittance to the Health Centre and the starting of new drugs she'd never been on before. This was not at all like our Mom. We felt sure, after listening carefully and researching what we had seen and heard her talk about regarding her mental and physical state, that adverse effects of new drugs could be the problem. I researched the drugs using:
* Therapeutics Initiative located at University of British Columbia
* Worstpills.org database from Public Citizen in the USA
* Cochrane reviews
* Searches and journal articles through interlibrary loan
We met first with our my husband's sister, who because of her close proximity to our Mom, was the one who met most of her needs and had power of attorney (and who had been a Nurse) to make sure we all saw eye-to-eye. With research in hand, we three met with medical staff, respectfully presented our material and conclusions and the staff agreed to a “drug holiday” from the new drugs she had been prescribed.
In the meantime the psychiatrist for the Health Centre had come through, diagnosed our Mom with Alzheimer's and wanted to prescribe donepezil (Aricept). This drug was NOT recommended as clinically useful by Therapeutics Initiative and might result in many adverse effects Mom already suffered from. He had a “scan” done which showed her frontal lobe was shrinking and said this confirmed his diagnosis. I researched this and found that everyone's frontal lobe shrinks with age. By this time, we had told the medical staff not to prescribe anything we had not previously approved and declined to have her put on donepezil (Aricept).
To make a very long story shorter, the “drug holiday” brought our Mom back to the intelligent and aware woman we'd always known (where did that Alzheimer's go!?). Not only did her mental status return to normal, she improved physically (a huge contrast to her original bedridden and delusional state when she was on the new drugs) and was able to participate in activities and exercise and also “train” her caregivers, if she thought they needed it. She improved to the point that we could take her out to her favourite seafood restaurant for oysters and white wine when we visited. This gave great joy to all of us.
We also intervened with her beta-blocker eye drops (timolol) for glaucoma. For a couple of years increasing eye irritation had bothered her. After researching her meds I found that her symptoms were also listed as adverse effects of those drops. In the meantime, her eye doctor instead had decided her lids weren't closing properly and that was causing the irritation and wanted to operate. She went through cardiac tests to see if she could survive an operation. Since she'd also recently been diagnosed with an MRSA infection in one eye we did NOT want to take this chance of septic infection from the operation and with some difficulty got the doctor to agree to try a different glaucoma drop in case she had developed sensitivity to the drops she had been taking. After using the new drops, irritation was no longer a problem. Since high intraocular pressure is only a risk factor for a very slowly advancing glaucoma in a woman of 90 years of age, we argued unsuccessfully for not treating the glaucoma at all to improve the quality of her life.
Our Mom finally contracted clostridium difficile late in 2007. She was not that sick with it but was given dose after dose of a powerful antibiotic (vancomycin) with each test and recurrence. At the same time other practical ways of dealing with the infection were not being stressed. Several in the nursing home had c. difficile. Her decline became evident to us. We had difficult getting medical staff to give her the probiotics we brought and make sure she drank the rehydration fluids we brought which can be helpful in avoiding recurrence. She also developed a stomach bleed because they couldn't titrate her warfarin (Coumadin) effectively due to diarrhea and not wanting to eat.
Eventually Hospice services were called in and she was taken off warfarin (Coumadin) and other drugs and given only palliative care. If we knew then what we know now, we would have asked for the antibiotics to be stopped after the first 2 or 3 rounds of the 6 she had. I believe this was harder on her than the c. difficile. Our Mom died in October 2008 after showering her family in her last weeks with love, gratitude, praise and her wise and down to earth philosophy of life: “religion is how you treat other people”.
Comments:
Over-medication of our elders is not an isolated experience. (A Bitter Pill: How The Medical System is Failing the Elderly by John Sloan, 2009, Greystone Books, Vancouver, BC). The over-medication of elders is a huge, uncontrolled experiment with drugs which were never tested on the frail elderly and were certainly never tested when taken together with many other drugs. This problem is a huge cost to our medical system in drugs and emergency room visits, but most important, an enormous cost in human suffering for our elders and their families. And, as a so-called “baby boomer,” I am seeing the writing on the wall for my own future.
Because our family was with our Mom so much, we were able to observe, ask, and listen to our Mom about what was going on with her. We had the ability to research what she said and compare this with the adverse effects of drugs she was on and we had the motivation (our love and respect for her) to leave no stone unturned to find out everything we could about her condition and what could help. This is where the family excels: love, looking and listening. Medical staff would never have the time to do what we could do, nor did they know our Mom and what she was really like, as we did. As well, the respectful (though persistent) communication between ourselves and the medical staff alleviated defensiveness and we were able to work together as a team in her best interests. The family is the expert on their loved one, and the medical staff needs that expertise to help them do their work and keep their patients safe. I have several more stories about other family elders we've worked with (for!) but I will offer this story as the best example.
Summary of what we learned as a family:
* Do your research on reputable sites and bring it to meetings
* Deal first with family differences over medical care so a united front can be presented
* Address medical staff with respect even when angry and listen to their views and concerns.
* Ask respectfully: Can we try this or try doing without this drug or procedure?
* Always debrief and console each other as a family at times when powerlessness, doubt and despair threaten to take over
* Be persistent
Final Note:
I would like to see research done to discover if the increase in what is being called Alzheimer's and dementia may be related to the widespread and increasing over-medication of the elderly.
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