living your best to the end

med wordsMedical Terminology

Every health condition comes with its own language, medical terminology and decision options. End of Life is no different.  While CPR and DNR may be familiar to many, that doesn’t mean they are understood as intended.

New ‘terms’ such as Allow Natural Death or AND and Voluntary Stopping Eating and Drinking or VSED have been created to add to options to consider.   Understanding the words and terms used is one thing. Being able to act on them is another.

Dementia – more than memory loss: it’s a broken brain

Dementia: Communication, hard-to-manage behaviours and safety A much needed re-framing of Dementia from Alberta Health Services clinical nurse specialists, Jennette Coats and Loralee Fox, who embrace care and caring for those with ‘broken brains’. I sat in on their extremely practical and sensitive strategy session for supervisors of Home-Care Workers organized by Revera Health Care.Whose patient population increasingly has one or more Dementia: Alzheimer’s, Lewy Body, Fronto-Temporal Lobe, Vascular Attendees included nurses, occupational therapists, social workers, personal support workers and physiotherapists who shared some of their own coping stories, dealing with their own parents with Dementia: “I could tell my mom all the awful stuff about my divorce. She’d forget as soon as I told her – so I got to ‘dump’ without guilt.” As the broken brain description implies, it’s more than just memory loss that caregivers cope with. It’s the responsive b behaviors – aggression, anxiety, agitation, wandering – that drains emotionally and physically. One of the strongest messages acknowledged the issue of time: Caring for someone with violent behaviours of dementia can take 50% more time Staying safe takes time: trying to be efficient can be self-defeating “Rushing through can cause emotional distress and increase anxiety, agitation, and aggression.” From the Gerio Psychiatric Education program in Victoria British Columbia, the acronym, ABCDE Apologies: One of the most powerful the calming strategies I’m sorry – I didn’t mean to upset you. I’m sorry – you’re right. I’m sorry I made you feel (angry, hurt, dismissed..) I’m sorry – I know you’re trying so hard. I’m sorry – this must be so hard for you. One of the...

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! — 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,, 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 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...

High Risk Surgery: Best Case, Worst Case

Decision tool to help understand chances of dying after high risk surgery “People worry about ‘dying poorly’, so one of the reasons for agreeing to surgery is the mistaken belief they’ll likely die – peacefully – in the Operating Room. This rarely happens.” Dr Gretchen Schwarze To understand what can happen even if the surgery or operation is successful, Palliative doctor, Toby Campbell and Surgeon, Gretchen Schwarze feel stories are necessary to paint a picture for ‘consent’. To illustrate, Dr Schwarze tells this story: “She’s in her late 70’s, with chronic kidney failure and COPD. She’s making it a home with lots of support – but just barely. Now she has an aneurysm, that’s likely going to lead to a medical crisis. Should she have surgery for the aneurysm to prevent the medical crisis?” Using statistics to describe success or failure, her family’s told: 50% chance of not surviving surgery 60% going to need dialysis for renal failure 80% chance going to need ventilator (breathing machine) What the family hears is: 50% chance of survival 40% chance of NOT needing dialysis 20% chance of NOT needing “So, they went for the surgery, took about 8 hours, overall doing well, as best as could be hoped for. When her family came to see her in the ICU, you can imagine what they saw. She was puffy with a breathing tube, with lines and wires and machines. They said, ‘this is not what she would have wanted’ and asked the team to withdraw all supports.” We’ve been so good with innovating in so many areas, communication is not one of them....

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I am dying from the treatment of too many physicians.

Alexander the Great