living your best to the end
Palliative Care: Doing ‘nothing’ is not an option

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...
Medically Assisted Dying: the benefits of the process

Medically Assisted Dying: the benefits of the process

Medically Assisted Dying When medical assistance in dying – MAID  (also referred to as Medically Assisted Dying – MAD and Physician Assisted Dying – PAD ) was just a twinkle in eye in most of North America, I began my layman’s journey into learning all things end of life – encompassing much more than ‘help me die’. Now, with medical assistance in dying taking center stage, I’ve made it my business to attend every Town Hall, Presentation and Info session. While the ‘license to kill’ crowd takes every opportunity to insist it’s suicide and murder, little time and attention is paid to two important outcomes: When MAID is refused Benefits of the process requesting MAID Taking a leaf from the ‘suicide and murder’ crowd, consider what happens when the MAID request is refused: You are condemning someone to a prison of suffering. A lifetime sentence with no parole. For some, it’s akin to sanctioning their torture. Of those who say, with a sneer in their voice:  “oh you can off yourself anytime you want, it’s the ‘medically assisted’ we object to”  Consider the aforementioned – imprisoned by their own disease whose very condition prevents them from taking matters into their own hands. Suicide: an act of desperation. MAID: an act of contemplation …with benefits. And therein lies an unexpected benefit of applying for MAID. In the poignant podcast series, ‘Better off Dead’ Andrew Denton takes personal umbrage when he hears a 24 year old applied for MAID. “I think of the years ahead of her – a mother, a wife, a career woman.” To this well-meaning sentiment, my rejoinder...
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...

Coalition for Compassionate Care Summit with ePatients

  ePatients: Engaged and Empowered and Invited The Coalition for Compassionate Care of California (CCCC) promotes high-quality, compassionate care for everyone who is seriously ill or nearing the end of life. What a human-centered, patient-centered goal. And now, the Coalition includes the patient’s point of view –  their  first Summit with ePatients : we who are not afraid to look beyond, ask beyond and search beyond what we’ve heard in doctor’s offices. It’s a given that the ‘e’ includes electronic (email, forums, searches) connectivity after all, in between doctor’s visits patients live their lives, and turn to the digital world for support comfort and information. Palliative approach: ripe for ‘ePatient engagement’ Since Palliative care focuses on all aspects of comfort (or as palliative doc, Daphna Grossman put it: doing ‘Nothing’ is not an option) patients and families have ample time to learn about what may be ahead, and put put mind to what’s important long before the end may seem nigh.  Comfort itself can mean many things, in addition to the all-important pain management.  The palliative approach: perfect opportunity for ‘engagement’. ePatient: Educate and Encourage and Evangelize about Palliative Care Great keynote by #ePatientdave with @KathyKastner in foreground at #cccc16! pic.twitter.com/XEOcpm39ir — Elizabeth Bailey (@PatientPOV) May 12, 2016 This is one of the many reasons I was so over-the-moon at the decision to invite patients to the Summit, and was even more so when I was selected. This, especially so because my fellow ePatients are living with chronic conditions – whether themselves or those they care for – where I am not. Rather I am immersed in the crises,...

Advance Care Planning: Women’s College Hospital and Kathy Kastner

National Advance Care Planning Day sees Women’s College Hospital as leaders: bringing the first consumer-created End-of-Life website to Family Doctors. TORONTO APRIL 16…Women’s College Hospital  (WCH) is the first to embark on a project with Family Doctors and patients to evaluate the only consumer-created website for end of life education, BestEndings.com, developed by Kathy Kastner. With the trend to involve patients in all aspects of health care – from research to policy – selected WCH Family Doctors will ask their patients to help evaluate BestEndings, via paper or electronic survey. Feedback and input will be used to improve the overall user experience. Dr Chen championed BestEndings.com in ‘Dragon’s Den’ type pitch session. Dr Chen, Assistant Professor, Department of Family and Community Medicine, University of Toronto, is winner of the 6th annual Excellence in Education awards recognize WCH staff who demonstrate a commitment to education, create an environment that enhances understanding and teamwork and who have a broader impact on WCH’s and women’s education and interprofessional activities. “Women’s College Hospital is leading the way by hosting a project like this. Working together is the first step to creating a mutual understanding of improving patient-doctor end of life conversations and being able to care for and treat patients in the best way possible. “ Says Dr Chen. “Kathy has a history of creating award-winning patient-centered education: she brings a ‘layperson’s perspective to end of life issues, along with curating evidence-based resources and an electronic Advance Directives form.” About Kathy Kastner: With a background in journalism and entrepreneurship, Kathy pioneered North America’s first hospital-based patient-education television networks, implemented for 20 years in top teaching hospitals...
Palliative Home Visits are the Future

Palliative Home Visits are the Future

“What I fear the most – what really terrifies me – is being short of breath and not being able to swallow.” So said the husband of his dying wife. This is terrifying to me, too, so I listened closely to the response given by Palliative Care  physician, Dr Sandy Buchman: “I can help with shortness of breath: there are medications that change the perception of that feeling of breathlessness. It doesn’t change the underlying cause, but I see patients whose breathing is still labored yet they say they’re now feeling fine. About swallowing: eventually, your wife will not be able to eat. That’s normal, and I can help both of you cope with that. “ I am in the privileged position of being invited to ‘ride’ with Dr Sandy Buchman on palliative house calls. Working at a teaching hospital, he often brings residents as part of their learning experience, but I am the only layperson to get this access. And what an experience it was: learning more about the palliative approach – to symptom management and to that all-important aspect of any meaningful interaction: communication. We decided my best introduction would be ‘educator’ and, although a bit apprehensive about intruding at a fraught time, I was universally welcomed. In a couple of the visits, I was able to employ ‘active listening’ with family members feeling comfortable enough with me to share insights that proved helpful. A range of palliative patient and family situations A B, 100 years old, on oxygen, was a renown pathologist; L.M., 88, bed-bound, the right side of his face paralyzed, was key economist to...