living your best to the end
Taking Palliative Care Mainstream with the help of ePatients

Taking Palliative Care Mainstream with the help of ePatients

“It quite honestly surprises me (the new kid on the block) that there aren’t standard services to build Palliative Care.” Charlie Blotner, 21-year old ePatient and co-founder of the tweetchat for those with brain tumours #btsm.  In learning more about Palliative Care, it just made sense that it should be part of standard services. Alas, not: If you’ve seen one #palliative care program, you’ve seen . . . one palliative care program – Jill Mendlen #cccc17 #sharedstandards — Allison Soeller, PhD (@allisonsoeller) March 14, 2017 Charlie and I were amongst 17 ePatient Scholars at the Coalition for Compassionate Care of California’s 9th Summit – the theme being ‘Taking Palliative Care Mainstream’  Dialogue and discovery were the other ‘themes’ of the Summit as patients’ perceptions of Palliative Care evolved.  Palliative as ‘the beginning of life’: “I thought palliative care = end of life, now I see it is the beginning of life.” – #ePatient after our first workshop #palliative #CCCC17 — Elizabeth Jameson (@jamesonfineart) March 13, 2017 Peter Kafka was the ePatient in question in Elizabeth Jameson’s tweet.  His  comment proved that there’s still myth-busting to do.  Peter is one of the founders of a peer-support group for men with cancer.  A feat unto itself: getting men to a cancer support group. Peter will bring his newfound Palliative knowledge back to the group. ePatients included It’s extraordinary to have patients and caregivers together in the same room with healthcare professionals whose practice and outlook embodies person-centered care.  They are open to hearing from us. But first, the pre-conference Planning Session. To work through the principles of Palliative Care, we ePatients...

Extreme Measures: Dr Jessica Zitter on a Palliative mission

“I’m going to call 911: a doctor is torturing a patient.” So said Nurse Pat Murphy to Dr Jessica Zitter  – just as Zitter was about to plunge a syringe into the neck of a patient with a host of health issues. Tho the 911 call wasn’t made, it was a turning point for Zitter – who trained as a critical care doctor, and for whom going gently into that good night felt like she was abandoning a patient, a failure. That encounter with Nurse Murphy led her to completely change her own medical ‘mandate’ – becoming a Palliative doctor – the specialty that embodies the philosophy of ‘patient-centered’ medicine. I first ‘met’ Dr Zitter in a New York Times essay in which she admits on her first night on call as a Palliative doctor she hadn’t yet completely relinquished her ‘critical care save the life at all costs’ ‘tude. A healthcare team in conflict The patient ­– a Holocaust survivor ­– was sleeping peacefully. She’d been admitted with pneumonia, but it hadn’t responded to treatment. As she got sicker and her breathing harder, she was made comfortable. The doctor attending the patient told the team gathered that she had clearly said she didn’t want a breathing tube, but the respiratory therapist wasn’t comfortable not intubating: “I’m not really sure she ‘got it’ she was pretty out of it.” Zitter was also unsure. The compromise was to strap on an oxygen mask overnight and re-assess in the morning. The morning found the patient ‘delirious and terrified, her mask off center and totally ineffective.” Confirmation of commitment to Palliative Care...
Vial of LIFE

Vial of LIFE

What is the Vial of LIFE Program It may sound like the fountain of youth, or miracle life-saver in a vial. It is neither. Instead, it’s information about your health care and wishes, stored in your fridge with a fridge sticker to announce its presence. LIFE stands for Lifesaving Information for Emergencies The Vial of LIFE sticker on your fridge alerts Emergency Response Teams (EMS) Paramedics and other health care providers who may come to your home that you have information in your fridge with directions about your health care and wishes. Why Vial of LIFE in the Fridge? In case of fire, your wishes will be preserved. What should be in your Vial of LIFE? There are many templates to help organize and detail your health conditions, concerns, medications and ‘next of kin’ or who to call in the event of an emergency. If you’ve completed Advance Directives such as BestEndings, or have a specific Do Not Revive instructions, a copy can be put with the Vial of LIFE documents. Many’s the time when a medical crisis at home requires emergency services, that too little is known about overall health, health conditions to be aware of (heart, kidney, lung disease or allergies to medicines) to provide proper treatment. A Vial of LIFE sticker on the front door is also recommended Below is a picture of one example of a Vial of LIFE form. To complete follow this link Vial Form Also read: Who’s Important? End of Life Machinery CPR: what does it really mean?...

Palliative Care: Doing ‘nothing’ is not an option

 Dr Daphna Grossman wants to set the record straight “In healthcare it seems we talk about ‘doing everything’ or ‘doing nothing’. With Palliative care ‘nothing’ is not an option. Certainly there are standards and recommendations and then there’s the Art of Treatment: our goal is to treat the whole person – physical, psychological spiritual and social. We look at a person’s goal of care. Can this goal be achieved? Not all illnesses can be cured however, symptoms can be alleviated.” Dr. Grossman is deputy head of the Palliative Care Unit at Baycrest, an internationally respected academic health sciences centre focused on aging, and onsite resident coordinator for their palliative care unit. Her passion for palliative care radiates off her, and she paints this picture: deputy head of the palliative care unit, and site resident coordinator for palliative care. – See more at: http://www.baycrest.org/educate/insights-into-aging-101/presenters-bios/#sthash.yuLPPMKA.dpuf deputy head of the palliative care unit, and site resident coordinator for palliative care. – See more at: http://www.baycrest.org/educate/insights-into-aging-101/presenters-bios/#sthash.yuLPPMKA.dpuf deputy head of the palliative care unit, and site resident coordinator for palliative care. – See more at: http://www.baycrest.org/educate/insights-into-aging-101/presenters-bios/#sthash.yuLPPMKA.dpuf deputy head of the palliative care unit, and site resident coordinator for palliative care. – See more at: http://www.baycrest.org/educate/insights-into-aging-101/presenters-bios/#sthash.yuLPPMKA.dpufHer passion for palliative care radiates off her, paints this picture: “If we only treat patients in terms of their physical issues such as addressing their test results it’s like looking at a picture in black and white. We need to also address the context, the person, who they are, and what is important to them to paint a picture that is in colour.” The thing is, people,often perceive Palliative...

Bringing Creativity into Clinical Practice with Older Adults.

It was a day of music, arts and drama, of passion and compassion, entitled, Bringing Creativity into Clinical Practice with older adults. Bringing creativity into a Clinic Day brought relief and hope to many working with Dementia and Alzheimer’s patients. The presentation was refreshingly unlike most clinical education and on breaks, we were greeted by a Drum Circle, lead by Terri Segal, Expressive Arts Therapist, Not just a demonstration, we were encouraged to pick up a percussion tool and join in. A combination exercise and mental health break. Another presenter – a psychiatrist –  showed photography assignments from nursing home residents, whose average age was 87, entitled: “A View of the World though the eyes of the Elderly: I’m 90 going on middle Age.” One of the photos – a self-portrait assignment – won first prize at an art show: it had been submitted anonymously and the winner surprised everyone when she wheeled over to accept. Robin Glazer, Director of the Creative Center: Arts in healthcare, in NYC was quick to point out that her ‘arts’ are not the same as Art Therapy. “There is no agenda here. It’s de-stressing and fun. We have excellent artists who are flexible and design their approach to the audience. For example, in a group of Japanese elders, our artist started with simple Japanese brush strokes: something they’d be familiar with.” She told of her own experience – which she attributes to honing her observational skills through art appreciation: “I was invited to Grand Rounds at a hospital that one of our artists is at. I saw a young man with an unexplained...