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I first met SPM-er and palliative physician, Dr Michael Fratkin on twitter. Michael’s re-imagined end of life caring through video conferencing is amazing unto itself, but more importantly what resonated for me are his insights into dying not as a medical dilemma but as a human experience. Here’s his TEDx talk to learn more.

I met Michael in real life at the Coalition for Compassionate Care of California Summit, where I was an invited ePatient. Humor and light-heartedness have their place in this emotional arena.

At the Summit, I took the opportunity to remind a roomful of folks dedicated to a dignified ‘end’ that we patients are strangers in a strange land, and need context along with jargon-free language.

Summit Keynote: Dave deBronkart

Dave deBronkart keynoted at the California Summit to great response, and admitted that — although the Model of Participatory Patient-hood — ‘participating’ in end of life planning had not crossed his radar. For him, the palliative approach was a welcome revelation.

Where many in healthcare feel unprepared to talk about end of life, not so at this Summit filled with folks who want to talk about dying. I couldn’t have felt more at home.

Pallative Pet Care Pet Therapy

I had several joyous conversations, one of which was with Dr. Karl Steinberg.



I was immediately taken with Dr Steinberg even before I knew of his palliative pet care pet therapy.

He had me at, “‘I find conversations about end of life some of the most rewarding.” Karl is a palliative care physician who ‘enjoys caring for geriatric patients and considers quality of life a primary goal for all of his patients.’

As a nursing home doctor, he does have the luxury of time to talk which many of his acute care hospital and community primary care colleagues do not.

“I was with a woman with serious heart condition amongst other things. She was running on fumes. Yet not once had the cardiologist, or her family physician—who had treated her for over 15 years—ever spoken to her about what to expect or help her plan for the end.”

This certainly speaks to the ‘save, fix, cure’ mindset of many specialists, robbing or worse – giving hope of the unrealistic sort – to patients and their families.

“A lot of people pray that when their time comes, they will just get a big heart attack in their sleep, but most people do not get that kind of a quick ending.  But there are positive aspects to a chronic or terminal illness.  I think that using this time of recognition of life’s end is an opportunity to take care of unfinished business, to make amends, to forgive, to say goodbye.  For those living with chronic illness, as it progresses there’s often less and less they can control.  While the day-to-day reality of their illness trajectory may not always be pleasant, we can still help people have the best day they can, and concentrate on the things that are meaningful and enjoyable to them.  Nearing the expected end of life offers a time to plan and concentrate on what brings joy and comfort.”

Physician Orders for Life Sustaining Treatment (POLST)

Karl often helps his chronically ill patients complete the Physician Orders for Life Sustaining Treatment (POLST) Form – complementary to an ‘Advance Directive’.

“I can talk to patients about decisions they may face, and what the reality of interventions like CPR and tube feeding are like, and help them make truly informed decisions.”  Karl notes that many people are reluctant to sign a “DNR” (Do Not Resuscitate) order on a POLST form because they believe this essentially means, “Just let me die.”  In fact, this designation on a POLST form only applies if the person has no pulse and is not breathing.  “In other words, they are basically already dead.  This just means if you find me dead, don’t try to bring me back with chest compressions and shocks and intubation.”  However, if the person still has a pulse or is still breathing, the POLST will direct what level of care they want—up to and including intubation, intensive care unit admission, and other invasive interventions—if that is what they want.

Another common misconception in the public, and even among some healthcare professionals, is that dying of dehydration is an unpleasant death.  “In reality, dying from no food or fluids—even though it sounds horrible—is a very benign exit, compared to many of the other ways our patients die.  You basically drift off to sleep, and after a few days, you don’t wake up.  Medication can be given for comfort, and moistening agents can be given in the mouth.  People seem very peaceful.  After usually 10-14 days, the blood pressure will drop so far that the vital organs can’t keep functioning, and the heart stops,” Karl explains.

California POLST

I was pleased to learn language in the California POLST was revised.

Instead of ‘limited’ treatment — which patients understood to mean ‘treatment would be limited’. The option is now worded in the more patient-friendly and goal-oriented wording, ‘selective’ treatment — treat conditions that are curable/treatable, but “avoid burdensome measures.”  For most people, this translates to “no heroics,” according to Karl.  “These are people who want to be treated with antibiotics, IVs, hospitalization and so on, but don’t want invasive or overly aggressive treatment like being on a ventilator or getting defibrillated.”

Often, at events for healthcare professionals, I make a point of reminding: in between doctors’ visits, we live our lives and our support and information is often found on the internet.

This good doctor says,

“I know some of my colleagues grumble about this but I welcome patients who are participatory – and do their own research. The paternalistic days of ‘doctor knows best’ are coming to an end, happily.  I for one don’t agree that a little knowledge is necessarily a dangerous thing.  I welcome education, engagement and empowerment among my patients and their families.  That makes the shared decision-making process that much richer.” Adding:  “I think what the Society of Participatory Medicine does is great.”

It may seem intimidating, emotionally-fraught and perhaps even tempting fate but I ask each of you Participatory people – healthcare professionals and patients alike – to consider taking action on these counts:

  • Pay attention to the small pleasures in life – the ones that can be yours right up until life’s end
  • Consider learning about some of the common crises points and ‘try on for size’ the options and complications you might face.
  • In a hypothetical future and ask not just how successful or invasive, but ask about recovery, complications and eventual impact on quality of life.

This is the participatory opportunity offered by your future ‘end’