living your best to the end

Screen Shot 2015-03-19 at 11.15.48 AMComfort Care and Quality of Life

What does Quality of Life mean for you? For a 98 year old, nearly blind, and unable to pee without a ‘stent’ in place, it’s being comfortably positioned in the warmth of her garden, with tissues and a cup of tea within reach.  A proud woman, she doesn’t like calling her health aids ‘caregivers’ because it makes her sound needy. Instead, they’re companions and a chauffeur.

What does ‘Comfort’ mean to you? Sometimes comfort comes of small pleasures: a loving touch, soothing music. For the 80-year old wheelchair bound man, it’s stroking his cat and getting his feet massaged.

Comfort can take on a different meaning as life winds down: shortness of breath, skincare, dry mouth, constipation along with pain and anxiety. Ensuring these needs are known, and are met, can make the difference to both patient and caregiver.

End of Life in Long Term Care: Personal Support Workers

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...

Things I’ve learned from dying

Living, knowing you are going to die Drawn, as I am, to learning ever more about how we die, and how ‘one’ dies, this David Dow title, “Things I’ve learned from Dying ” had me at ‘hello’ Dow – who is very much alive – is a death row lawyer in Texas . He writes beautifully about, and pours insight into the humanity of those on the row. But that’s not why I found his book so important and compelling: it’s the parallel story that I fastened on: Dow’s story of Peter – his father in law –  who died within a year of diagnosis. Throughout the sickness, its treatment and decisions about, Peter shares with Dow some light, along with the darkness of regrets, disappointments, conflicts and depression, and self-awareness. These emotions and reactions along the journey, tell an eternal story: Not wanting to lose a loved one, perhaps at the cost of the loved one’s quality of life As Peter says: “You all want me to stay alive, but that is because you want me to be in your lives. Of course that flatters me, and makes me happy and sad, but that desire does not give you a ballot, and even if it did, it is wrong to cast a vote that treats me as a means to your ends. I want to die with dignity, and you are all determined to thwart me.“ Peter is the loved one, torn between his own needs and those of his family: “For [daughter] Katya, either I am here or I am not. For me the line is elusive....

Pain as a Cause of Agitated Delirium

“Can’t you do something about her pain?” An 85-year-old woman with multiple medical problems, including dementia, coronary artery disease, renal insufficiency, and peripheral vascular disease, was admitted to our hospital with urosepsis. Her hospital course was complicated by the development of dry gangrene of her left foot, Candida sepsis, Clostridium difficile enterocolitis, and multiple deep sacral and trochanteric pressure ulcers. When housestaff asked her son if he wanted us “to do everything,” he always answered yes. She was able to be weaned from the ventilator and was transferred to a medical unit for continued treatment of hospital-acquired C difficile enterocolitis and wound care of her multiple stage 4 ulcers. She underwent 4 surgical debridements under general anesthesia in the operating room over a several-month period but remained persistently febrile despite continuous treatment with broad spectrum antibiotics. The patient was withdrawn, tense, and turned toward the wall in a fetal position, but she screamed and cried out for her mother, moaned in pain, and tried to hit and strike out at the nurses when they performed her twice-daily dressing changes. She refused all efforts to feed her or offers of sips of fluid and received all nourishment and hydration through her feeding tube. She did not respond to the voice or touch of her son or grandsons when they visited. On day 63 of her hospitalization, a palliative care consultation was requested by the nurse manager on the floor because of nursing staff distress about their perception of having to hurt the patient during dressing changes. With the agreement of the attending physician, who had refused to give medication, on...

Dignity Therapy at Life’s End: Thank you Dr Harvey Chochinov

Dignity Conserving Care asks at life’s end: ‘What do I need to know about you as a person to give you the best care possible?’ To give an answer as a person, rather than as a health condition is a focus-changer for providers and for patients alike. As a patient – albeit feeling my healthiest –  I wouldn’t be able to answer that question without some serious soul searching.  However,  thinking about this, when depression dropped its darkness on me, I told my GP of almost three decades: ‘I so hate not feeling energetic or optimistic’. I could do that because she’s come to know me as a person. But at life’s end, will she be there with her specific knowledge of what makes me, me? My family knows me both energetic and optimistic, and fatigued and depressed. But I’ve not told my family it’s one of my worries at life’s end – oxymoron tho this may be – I don’t want to die depressed. I am aiming for a joyful departure. I feel more confident in this, knowing about Dignity Therapy: Thank you to Winnipeg’s Dr Harvey Max Chochinov  – a psychiatrist who has been forever interested in how people cope with and manage chronic debilitating and often terminal illness: Dr Harvey Chochino Dr Harvey Chochinov: “My older sister was born with and lived with Cerebral Palsy, so I was a brother who grew up knowing something about chronic life altering conditions.” Moving forward in his career, studying at Cornell, Chochinov found that in his day to day working largely with cancer patients… “what patients encountered coping with chronic, deteriorating...

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It’s not death, it’s dying that alarms me.

Michel de Montaigne