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 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 Patients at the Coalition for Compassionate Care of California’s Summit. The theme:  ‘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. Patients 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 met the night before the Summit....

Comfort: How important is it to you at life’s end?

For many – perhaps most – suffering is the biggest worry about life’s end. Suffering doesn’t start and end with pain management. It includes peace of mind and comfort – both of which are highly individual, and can hold the keys to perception of and requirements for a ‘good death’: What comforts you, or what brings you comfort? What are your small pleasures, or what gives you pleasure?  What brings you peace of mind? Comfort and feeling good about herself is the gift a palliative doctor gave to a terminally ill patient who wanted no further medical treatment. He simply asked: “What would make this a good day for you?” “If I could sing” The patient, Dolly Baker (nee Thelma Botelho), was once a renowned songstress.  And sing she did. I have sat in countless meetings, workshops, think tanks, round-tables where everything but the word, comfort is used to help us on the way to as good a death as possible. Amongst the questions commonly asked: What are your values? What are your beliefs? What’s important to you? What are your goals of care? These may may all play into what makes us feel good,  and brings comfort, but these approaches often then require further probing and questioning which takes so much more of that precious thing that’s often in short supply: health care professionals time. Revealing answers, reveal simple solutions Answers about comfort reveal solutions that: often have nothing to do with medical interventions; can bring comfort and joy to attending healthcare professionals; can help family and friends support more purposefully and meaningfully; As a ‘layperson’ whose focus...

Grief and Grieving: death, dying and beyond

Grief and grieving: in life and death For each of us, our Book of Life has many chapters on grief and grieving, covering a broad spectrum: I can still conjure the pang of loss when my youngest went to Kindergarten;  the sense of betrayal caused by the end of a friendship, and seeing neighbourhoods change or vanish. I’ve grieved them all. We each grieve differently (I’m always taken aback by those who judge based on lack of ‘expected’ signs of grief) and we each grieve different things: One 30 year old grieves her thick auburn hair turning gray, while a 65-year old grieves her 40-year old son going bald. When it comes to aging and illness I am learning  – although not necessarily articulated as such – we grieve losses along the way: Roberta, 70, grieves arthritic knees that prevent her running – an activity that calmed her brain while keeping her fit. Then, there’s the grief and grieving that comes with end of life and death –  warranting separate chapters in our Book of Life. That grief is so specific that Meghan O’Rourke, in her book The Long Goodbye – written after her mother’s death,  quotes  Iris Murdoch: “The bereaved cannot talk to the un-bereaved.” It’s true that many of us are uncomfortable, uneasy and untrained in response to grief of any kind. However, for a death, there are long- practiced traditions and rituals in our respective cultures that have served as time-honoured comfort for those benumbed including our communities cocooning the bereaved. In some societies, there is no recovery from the grief brought on by death. Yet,...

Obituaries and those who write them

I’m noticing new approaches to obituaries Defying a history of somber and factual, I’m seeing welcomed injections of humour – including obits written by the deceased.  Before, of course. This means leaving blanks as you can see from above picture. Walter George Bruhl Jr. of Newark and Dewey Beach DE is a dead person, he is no more, he is bereft of life, he is deceased, he has wrung down the curtain and gone to join the choir invisible, he has expired and gone to meet his maker.He drifted off this mortal coil on March 9, 2014 in Punta Gorda, Florida. His spirit was released from his worn out shell of a body and is now exploring the universe.He was surrounded by his loving wife of 57 years, Helene Sellers Bruhl, who will now be able to purchase the mink coat which he had always refused her because he believed only minks should wear mink. – McGroarty Achieves Room Temperature! Kevin J. McGroarty, 53, of West Pittston, died Tuesday, July 22, 2014, after battling a long fight with mediocracy. He enjoyed elaborate practical jokes, over-tipping in restaurants, sushi and Marx Brother’s movies. He led a crusade to promote area midget wrestling, and in his youth was noted for his many unsanctioned daredevil stunts. A thoroughly irate woman decided to use her obit to vent: It pains me to admit it, but apparently, I have passed away. Everyone told me it would happen one day but that’s simply not something I wanted to hear, much less experience. Once again I didn’t get things my way! That’s been the story of...

A mother, a daughter and Ovarian Cancer: “Love you so much.”

When Karen Greve Young gave me the hot-off-the press copy of ‘Love you so much: a shared memoir’ she explained: “Sometime into my mother’s treatment for ovarian cancer, we decided we wanted to do something meaningful.” Told by both daughter and mother, the title of their memoir is Victoria Zacheis Greve’s standard email sign-off. Email proves its worth in this memoir: over the four and a half years from diagnosis to death, email connected mother and daughter who were living half a world away, and email connected Karen with her father, brother, aunt and friends. These practical, poignant, personal exchanges offer a real picture of living under the cancer cloud. But they also show how life must go on, including falling in love, marriage, graduations, promotions, retirement, across-the-ocean and back travels, and infertility. In an example of the strength they drew from one another Vicki – whose survival strategy includes trying to be unfailingly positive and determined ­– writes Karen: “Keep up your spirits. If I can lick cancer, you can conceive a child….Love you so much.” Throughout the memoir love, support, respect, tenacity and humour ring true: Vicki addresses emails ‘Dear pushy little sister’ and, depending on the context, signs off as MOB (mother of the bride) and CA (co-author). Also shared is the grim reality: “All I want to do is to feel better and live to see my grandchildren – I truly don’t think either one is in the card for me. In the meantime, I’m trying to live as normally as possible with a deepening depression and flagging energy.” Karen’s correspondence, her narrative and the...

Zal Press: Mr Patient Commando – Who’s important?

Guest blogger, Zal Press, created Patient Commando to give patients’ stories a ‘voice’. Pictured here in his ‘teach about Crohn’s’ lab coat, he shares his thoughts on ont of Best Endings topics: Who’s important to you? Who’s important in my end-of-life plan? Contemplating that question, it took me a moment to realize that “I’m important!” Taking Inventory of Who I Am It starts here, similar in some respects to a computer chip, the intelligence that powers the organism, I am: 61 years old, orphan son Living with Crohn’s disease for 30+ years, with multiple surgeries, treatments, medications Husband of 32 years in a loving relationship (more on this later) Parent of 2 young adults who are compassionate, thoughtful, open minded critical thinkers. Who are my ‘important’ extended family relationships? I’m a younger brother (yes at 61) he and his wife are present in my life. I’m a cousin to people who are important to me. Some of these relationships play major continuing roles that are vital to my existence. I’ve got in-law status. I’m an adopted member of an Israeli family. I’m going to have to determine what guidance I’ll have to give them so they’ll feel comfortable with themselves about my situation. Beyond blood: Chronic illness is a team sport. As a Crohn’s disease patient, I have several team members. While I may be the Captain of my Team, for over 30 years I’ve relied on someone in particular who’s played many important roles. It’s no secret that my wife, Cec, has been on this trip with me for decades. She’s managed my life and my kids when...