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 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 and life-threatening illness didn’t seem to be making it onto our professional radar: at times, we were making people who already felt vulnerable feel even more vulnerable.”
Dignity Therapy: “With small acts of kindness, we can make a difficult time easier.”
Sometimes people start to feel that they have outlived their usefulness and that life has no meaning. Dignity Therapy, a brief psychological intervention our team has developed, can offer a renewed sense of purpose. It’s a way of giving patients back the ability to do something they feel useful, meaningful. For one woman it was giving her husband permission to get another partner. Dignity Therapy allowed her to embrace a role she valued: being a wonderful wife, and caring for her husband. Knowing she wouldn’t be forgotten, she said to her husband: ‘you deserve happiness.
What is Dignity Therapy:
“During a 30 to 60 minute session, the therapist, trained in Dignity Therapy asks a series of open-ended questions that encourage patients to talk about their lives and what matters most to them. The conversation is recorded, transcribed, edited and then returned within a few days to the patient, who is given the opportunity to make changes before a final version is produced. Many choose to share the document with family and friends.”
“It’s helped bring my memories, thoughts and feelings into perspective instead of all jumbled emotions running through my head. The most important thing has been that I’m able to leave a sort of ‘insight’ of myself for my husband and children and all my family and friends.”
Chochinov evaluated Dignity Therapy’s impact on family caregivers – the loved one’s survivors. The result: overwhelming endorsement; in fact nearly everyone said they would recommend it for other patients nearing end of life and their families:
“Mom was extremely closed emotionally and had huge difficulties expressing her feelings. This gave her an opportunity to do so without feeling vulnerable.“
As the Dignity in Care site points out:
People working in health care can have a huge influence on the dignity of those who use health care services, which in turn can improve the patient experience and increase satisfaction with health care.
Indeed, reception from the healthcare providers has been very positive:
People working in palliative care – physicians, nurses, pastoral care professionals, social workers, psychologists – welcome this additional pastoral care, social work, psychologists – welcome this additional instrument as a useful way of attending to families.
I am so totally blown away by the humanity of the Dignity Model, I say to the good doctor: ‘You must be proud.’ Expecting him to respond like a parent whose child has received world recognition I was surprised by Dr. Chochinov’s hesitation.
I am gratified and pleased. But proud? To many people still die poorly for me to focus on pride; some day, perhaps, but certainly not now.
Dignity Therapy is relevant to all life threatening and life limiting conditions – be it end stage heart disease or neurology. It’s being utilized and studied far and wide: China, Japan, Taiwan, New Zealand, Australia, Western Europe, US.