living your best to the end

A new medical decision PATH for the frail elderly

Palliative and Therapeutic Harmonization: PATH In plain language PATH means an assessment and treatment recommendation that takes into account what’s going on with us as a whole person, rather than our specific parts.  A worthy goal for all of us, but with particular importance for those both elderly and frail, and who may have a dollop or more of confusion. Dr Laurie Mallery Dr Paige Moorhouse Dr. Laurie Mallery, head of the Division of Geriatric Medicine at Dalhousie University and Director of the Centre for Health Care of the Elderly at the QEII Health Sciences Centre in Halifax, Nova Scotia. and DrPaige Moorhouse with her Masters in Public Health, also practicing at the QEII, are like-minded in their concerns for care of the frail elderly. Together,  these two good doctors took the initiative to research and develop a  framework for medical decisions related to the frail elderly. The result is PATH: Palliative and Therapeutic Harmonization. Says Mallery: “We spent many years, looking at all factors related to the frail elderly.  Drs Mallery and Moorhouse  practice and teach at the PATH CLINIC . The approach has three parts: 1. Understanding “The frail elderly are often in and out and in and out of healthcare with many crises, assessed by many people – each of whom brings their own lens. There’s no  organizational plan to take this info and use it collectively and understand the significance, for example: is this person near end of life, and should we take that into account in discussing a medical procedure. Sometimes the patient seems frail but they really have a hearing impairment. 2. Clarity of Language “For those...

Dialysis and End Stage Kidney (Renal) Disease – ESRD

End of life planning for those with specific chronic conditions:  Topic – Kidney Failure “End-of-Life Care planning (aka: Palliative Care or Advanced Illness Management) is essential for kidney failure patients.” Dr Robert Bear, Nephrologist, Blogger, Tweeter and Author Dr Robert Bear, whom I met via twitter (@RobertAllenBear) educates me on end of life decisions faced by those with end stage kidney disease – also called kidney failure. “While many frail and elderly patients with kidney failure will not choose dialysis treatment, for those that do the annual death rate on dialysis is 15-20%; and, overall, about 20% of long-term dialysis patients will ultimately decide to withdraw from it. “ As Dr Bear reminds me: “60 years ago, doctors would give mostly comfort care to those with end stage renal disease (ESRD) These days, specialists who provide that kind of care are in short supply” Today, for those with ESRD, comfort seems less emphasized than dialysis, now an option, thanks to medical advancements. It wasn’t until I saw ‘Gayla’s Goodbye’ and heard first-hand why she decided not start dialysis, that I began to understand its impact on life: ”My mother had kidney failure (ESRD) and went on Dialysis. She got more and more exhausted from those trips to the clinic. They took up so much of her life. It’s not for me.” Gayla subsequently died peacefully at home. Dr. Bear describes dying of ESRD as ‘typically a painless death’: “As the poison levels rise she would’ve spent more time sleeping. Essentially, she would have ‘slept away’. [blogger’s note: isn’t that how we all want to go?] “If patients are in...

Long Distance Caregiving at Life’s End

Long distance caregiving When a parent becomes very ill, living far away is stressful. Growing up in Lebanon, Nada studied and worked in the US, before migrating to Canada – where she set about restarting her career. Always, in the back of her mind, was the need to eventually support her mother – who remained Lebanon with the rest of Nada’s family. A call from Lebanon changed her priorities:  her mother, twice cancer survivor, was rushed into gastric surgery. With medical bills to pay, Nada, then 6 months pregnant, took the first short-term job contract in Canada – thinking her best help would from a distance. In Lebanon, her family thought that being at a distance and pregnant – Nada should be protected. Nada mourns this decision: “I was not consulted. I did not need protecting.“ Nada’s lesson:  Don’t presume to make decisions on someone else’s behalf. The doctor treating Nada’s mother was a strong advocate of an experimental treatment. It’s not unusual for patients and their families to make an educated decision to proceed with experimental treatments, when proven treatments have been ineffective. “My mother, a college graduate, found the idea suspicious but I insisted. I remember talking to the doctor who downplayed its published side effects. Even when my mother complained, he assured me they were manageable. Being at a distance, I had no way to gauge the reality. As her mother continued to talk about the pain of stomach cramps Nada researched complementary treatments, but the doctor was emphatic about continuing the experimental treatment. “I feel he played upon my emotions: I certainly felt pressured when he...

MedicineX at Stanford U: all the elements of reality tv

Life with several chronic health conditions  For 3 days, I was surrounded by remarkable people whose litany of health issues and coping techniques had all the ingredients of a successful tv series: Courage, drama, humour, pathos, ethos, mystery, adventure, tragedy, fortitude, lateral thinking, creative thinking, tears, fears, bonding, loss, disappointment, triumph over adversity, love, hugs and hiding out as necessary. These stalwarts have diseases affecting every system in the body: Heart, lungs, liver, kidneys, immune, respiratory, digestive, musculoskeletal, amputation, brain. Many are also caring for a loved one with one or more serious health condition. Health care professionals lurked at every corner, and technology of all sorts is in evidence. Perhaps, reading this, you’d expect the series to take place in a retirement home, assisted living or nursing home. Not so. This amazing group was at Stanford University in Palo Alto California. The youngest attendee – Emily in her 20’s, who wrote a poignant blog, Letting people care for you. Not often easy and another lesson learned. MedicineX: Warmed the heart and the spirit It’s a conference designed around and for patients. A conference that aspires to change the way medicine is practiced and the way systems are designed; a conference that changes – for the better – relationships between patients and providers, and that promotes the concept, practice and benefits of patients helping patients. These desperately ill people are brought together by a determination to have control, and take control of their health and their lives and whilst on this journey to support each-other. This was evidenced several times. As an example, when one of the ePatients had...