Decision-makers: conflict and consent.
Substitute, proxy, surrogate, agent. They all mean the same thing: the person or people you’ve assigned the authority to make decisions on your behalf, if you become too ill or too injured to speak for yourself.
This may be one of the most important parts of your end of life ‘directives’: it’s often a heavy and serious responsibility to assign. Many’s the substitute who’s suffered from Post Traumatic Stress.
Conflict
Conflict can come from all sides: your surrogate decision-maker(s) may not be ready to let you go – perhaps feeling you’re giving up. Studies show that surrogates direct according to their own wishes, rather than the patient’s directives. Healthcare professionals, too, often feel like they’ve failed if the decision is made not to try another intervention or procedure.
A health crises can throw decisions into array:
- Many would like to die at home, in familiar surroundings. But health scares at home can be too much to handle for family or caregivers or even the patient.
Consent
Even the seemingly simple act of giving ‘consent’ and ‘informed consent’ isn’t so simple in practical terms. It can help to understand these complexities, to better ensure wishes can be honoured.
My big brother, John, had the best possible end
My bro died at home, on Palliative/Hospice Care Although we did not know it at the time, my brother’s ‘end’ started November 2018, with a brain tumour diagnosis. Surgery before Christmas that year was deemed ‘successful’ and John was in such good physical shape that he was released early. He sailed through weeks of radiation and chemotherapy with few of the expected side effects. His only physical change was that he started wearing hats. Humour was his go-to modus to get through, the sillier the better. We cheered every picture he sent us, mugging for the camera: electrodes on his head or ridiculous hospital gowns, a ‘brain fart’ toy. the tumour came back with a vengeance In August, results of an MRI were devastating. From then until he died –almost a year to the date of diagnosis – the speed of his physical decline was shocking. It was his confused speech that led to the initial consult that led to the diagnosis, but – until August of 2019 – he was able to have a conversation, with words ‘filled in’ for him. When he lost that ability, he still hammed for visitors. His right side was the first to ‘go’, but he still made funny hand gestures with his left hand and jiggled in his seat when bouncy music played. His wife, Susan Teskey (herself a formidable producer/director) proved an amazing caregiver who also did her best to inject humour wherever possible: each piece of home care equipment was named and formally introduced. The commode, for example, was Clarence. The high top toilet seat, Harold. She made sure his...
Ricky’s mother had a ‘good death’
Of the three siblings, Ricky – the sole daughter – was closest to her mother, Anna. “When my marriage ended, my kids and I lived with my mother. We all adored her.” In the last three years of her life Anna- who died at age 91 – was beset by Dementia. “It was more than memory loss – it was her wonderful personality that vanished.” In spite of the pain of her beloved mother disappearing, Ricky took care of her until the end.
