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.

About consent

Who's important

Important to consider

Ricky’s mother had a ‘good death’

by KathyKastner | Feb 19, 2018 | Blog, Personal Stories

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.

A beautiful death

by KathyKastner | Feb 19, 2018 | Blog, Personal Stories

“My mother was ‘dying’ for about 10 years – with her sickness, she seemed often on the brink of death, and then she’d rally. We’d all said our goodbyes a number of times. But on the day she actually died, my father was in her bed, his arm around her, holding on to her. He’d been in this position for a long time when my former brother-in-law came to visit. “My mother and her former son-in-law had kept up a really special relationship even after my sister had divorced him. They were very close and spent a fair bit of time together. My father would call him ‘her spiritual companion’. When he came into my mother’s room, she was looking grey and frail. My father’s arm was falling asleep holding her. ‘Can you take over here?’ he asked when former brother-in-law appeared. Take over he did, cradling my mother against him. My mother looked at him and her face lit up. Her cheeks became rosy and her eyes twinkled. She looked like a teenager again. She smiled, and took her last breath. It was a beautiful death. I was glad to have been there. Interestingly, when I was about 5 years old, I had a dream that my mother died in the arms of a younger man. It was the only such dream I’d ever had.” ...

Personal Support Worker (PSW): caring at life’s end

by KathyKastner | Aug 9, 2015 | Blog, Inspiration, Personal Stories

Dealing with grief and End of Life as a Personal Support Worker Guest Post by Natrice Rese It’s something that you are prepared for as a student. It is understood that as a caregiver, a PSW, you will maintain a distance, a separation, a formal kind of relationship with your clients and residents. But when you actually begin the job you quickly find out that it is not quite as easy to deal with when you can put faces, names and personalities to the residents you care for. Close connections bring an affection for your clients and vice versa. Personally I found it hard to be at a distance: When you give total and personal support to residents you can’t help but have feelings of friendship, protection, and empathy that is by nature what a caregiver has in his or her “toolbag”. I recall one particular lovely lady who was often in my care in the facility where I worked. I will call her “Mary”. Mary had brilliant silver hair and very blue eyes, lots of smiles, laughs and mischievous looks. She was obviously loved by her family and had visits often. Mary was dealing with many issues: she endured a stroke that limited her movement and mobility. She also had dementia so she needed a lot of support, smiles, hugs, and conversation. Although Mary was confined to a wheelchair she was able to roll her chair around the halls and with one hand surprisingly strong. She was as continually busy as a small child is, always on the move, always into something – often trying to exit through doors, enter...

End of Life in Long Term Care: Personal Support Workers

by KathyKastner | Mar 3, 2015 | Blog, Personal Stories

Personal Support Workers (PSWs) Rock and Rule Anyone who’s needed practical help with daily living when in a health situation knows that it’s not the doctor or nurse you turn to or rely on. Whether at home, or in a health facility, the day to day care delivery falls to the Personal Support Worker. In a workshop organized by the Ontario Long Term Care Association focusing on Palliaitve Care in Long Term Care – with the theme: Care for Life, I sat amongst a packed room-full of (mostly) women PSWs. Their satisfaction comes not from having the latest medical intervention, or cutting edge equipment but rather from spending more time with their ‘residents’ than any other healthcare professional – which means knowing the small pains and pleasures better than anyone – often more than family members. I tweeted to the world: Day-to-day efforts may seem thankless work but for the PSW this goes with job satisfaction: In Palliative care – with its emphasis on whole person comfort and whole person symptom management – these PSWs have learned to read their residents non-verbal language: often a factor in those with Dementia. PSWs form such lasting relationships with residents and their families that they often attend the funeral and keep in touch after a residents’ death.I wonder, with so many who are in their care at life’s end, how do they cope with deaths – do they call upon social workers, chaplains or bereavement counselors? The resounding answer is: “We get comfort from our colleagues – fellow PSWs: only another PSW can understand the relationship and loss.“ I was shocked...

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None of us, in our culture of comfort, know how to prepare ourselves for dying, but that’s what we should do every day.

Joni Eareckson Tada