Monday, November 26, 1973 was a miraculous day.  

I first heard about it from Dennis Costa -- it was the first thing he mentioned when I asked him to tell me about his daughter Candice.  He told me, with a hint of tears in his eyes, as we sat together in the ICU conference room last month, that he had known Candice literally from the moment she was born -- he was right there in the delivery room, which he mentioned was a very unusual thing at the time for a father.

Dennis hasn't (yet) told me why he and his wife named their baby girl Candice, but I think the name was perfect.  My dictionary (Google, of course), tells me that the name "Candice" comes from a Greek word that means "sparkling".  Or a Latin word meaning "shining".  

Words evolve, and I learned here a few more things about "Candice": 

People with this name have a deep inner desire for a stable, loving family or community, and a need to work with others and to be appreciated.  

and

I'm not sure about the "sometimes reckless with...money" part, though I suspect Stephanie may make me laugh with at least one story that somehow fits that, too.  And the Candice I have come to know has never shown any interest in being "in the limelight" -- and the reason that she finds herself there right now would be anyone's "worst nightmare".  Actually, maybe worse than "worst".  

And for sure there is nothing that Candice is "enjoying" about the reason she is currently the "center of attention" for so many people.

I told Candice (her real name, used with her permission) Friday morning that she is one of the most amazing teachers I have ever had.  I enjoyed telling Stephanie, in the hallway a little later since Candice was sleeping, that I had realized that the word "doctor" in Latin meant "teacher", and that seems perfect, too.  In the literal sense, Candice has been at least as much my/our "doctor" as I, and the many other amazing doctors she has, have been for her.

You can learn more -- maybe finding that Candice (and Stephanie) can be your "doctor/teacher" too -- from the website that Stephanie has created: "I Heart Candice".  There you will learn about ways in which Candice's room at BIDMC is filled with more "sparkling" and "shining" love (and laughter, and sadness) than you may be able to imagine.  Don't worry about trying to understand it (I've given up for now), just see it.

The kinds of things you will learn aren't actually learned by reading alone, or even seeing some of the pictures on the website.  You can only experience them by doing things like Candice, Stephanie, family, friends, nurses, doctors, social workers, and others have found themselves doing when trying to help each other.

If you go to the BC/BS of Massachusetts website, you will learn that "At Blue Cross Blue Shield of Massachusetts, we're committed to ensuring that our members get the best care."  It then goes on to define "best care" in just six words -- "best care" is care that is:

Since my last two postings were long, this one will be short.

A good answer to a truly difficult question can be very, very hard to find.  Sometimes, maybe even impossible.  When the question is hypothetical, then even if no answer is ever found, the search for an answer can be energizing, sometimes even a lot of fun.  

No family should suffer through nightmares like the ones experienced by the families of Jahi McMath and Marlise Munoz.  

The first nightmare started at 2 am on November 26, when Erick Munoz found his wife Marlise unconscious on their kitchen floor.  She was 33, and 14 weeks pregnant, with their second child.

“As a married man, I became very familiar with the way Marlise’s body felt, the way her hair smelled, and the way her eyes appeared when we looked at each other, among other things.  

Over these past two months, nothing about my wife indicates she is alive...

When I bend down to kiss her forehead, her usual scent is gone, replaced instead with what I can only describe as the smell of death. As a paramedic, I am very familiar with this smell, and I now recognize it when I kiss my wife. 

In addition, Marlise’s hands no longer naturally grip mine for an embrace. Her limbs have become so stiff and rigid due to her deteriorating condition that now, when I move her hands, her bones crack, and her legs are nothing more than dead weight…

Finally, one of the most painful parts of watching my wife’s deceased body lie trapped in a hospital bed each day is the soulless look in her eyes.  Her eyes, once full of the “glimmer of life”, are empty and dead.  

My wife is nothing more than an empty shell.  She died in November 2013, and what sits in front of me is her deteriorating body…I just want to put my wife’s deceased body to rest, and provide peace for our family.”

On Friday, Judge R.H. Wallace ordered the hospital and it doctors "to pronounce Mrs. Munoz dead and remove the ventilator and all other "life-sustaining" treatment from the body of Marlise Munoz."  On Sunday the hospital and its doctors complied.

It used to be pretty obvious.

The headline in the NY Times -- "How Doctors Die: In Coming to Grips With Their Own Mortality, They Are Showing the Way for Others" -- suggested that maybe doctors are finding it easier than most other people to make sure they are cared for at the end of life the way that they would want to be, including being at home, rather than in an ICU, if that is their preference. 

In a major step forward toward ensuring that patients with serious illnesses are informed, in a timely way, of the full range of options for their care, the Massachusetts Department of Public Health recently released its initial draft of proposed regulations to implement a new law passed by the Massachusetts legislature last year.  

The department shall promulgate regulations for the establishment of a patient and family advisory council at each hospital in the commonwealth. The council shall advise the hospital on matters including, but not limited to, patient and provider relationships, institutional review boards, quality improvement initiatives and patient education on safety and quality matters. Members of a council may act as reviewers of publicly reported quality information, members of task forces, members of awards committees for patient safety activities, members of advisory boards, participants on search committees and in the hiring of new staff, and may act as co-trainers for clinical and nonclinical staff, in-service programs, and health professional trainees or as participants in reward and recognition programs. 

A "free bonus" of PFAC's engaging actively in helping hospitals (and other health care facilities where they exist) implement the new requirements is that each PFAC is also required by law to submit, by October 1 of each year, a report on its activities that is publicly available.  These reports, compiled and readily available with much additional useful information by Health Care for All, allow health care facilities to exchange ideas and evolving "best practices".   

...This change has to come from the outside in. It comes from known experiences that you are the expert on. You are the expert on your family. You know what happened to your parents, to your siblings and that you have to bring this change into the system.”

The model is similar to how women changed birth a generation ago. The doctors weren’t the ones that said, “Oh, yes please. Bring the video camera into the birthing room. Let’s have babies in a bathtub. Don’t put your feet in the stirrup. Let’s have a warm and engaging lovely event.” It was basically parents, especially women, who said, “This is what’s right. The experience that I had giving birth shouldn’t be that way.” They’re the ones who changed the system from the outside in.

We think the same thing is happening with the end of life experience.

So yes, I hope health care professionals will weigh in for the November 21 Public Hearing on the new regulations.  But what we need most of all -- not just leading up to November 21, but forever after -- is the voices of patients and family members themselves, telling us how they would like to be informed, and then regularly afterward telling us how well we are (or are not) doing.

I was asked to lead a conversation last week at Temple Israel in Boston about caring for loved ones (and ourselves) near the end of life.  Before I was introduced, my host, Rabbi Ronne Friedman, provided an introduction that included the Talmudic story of second-century Rabbi Judah, the head of the Rabbinic Academy and redactor of the Mishnah, which Rabbi Friedman said "conveys Jewish attitudes with regard to the end stages of life":

When Rabbi Judah haNasi lay dying, the Rabbis decreed a public fast and offered prayers for heavenly mercy. They, furthermore, announced that whoever said that Rabbi Judah was dead would be stabbed with a sword.  Rabbi Judah’s handmaid ascended the roof and prayed: ‘The celestials desire [that] Rabbi Judah [join them] but the mortals desire Rabbi Judah [to remain with them]; may it be the will [of God] that the mortals may overpower the immortals (in other words, at first, she joins with those who pray for his life).  When, however, she saw how often he resorted to the bathroom, painfully taking off his tefillin and putting them on again, she prayed: ‘May it be the will [of the Almighty] that the immortals may overpower the mortals.  As the Rabbis continued to pray incessantly for [heavenly] mercy (their prayers thereby shielding Rabbi Judah from death) she took up a jar and threw it down from the roof to the ground. [For a moment] the astonished rabbis ceased praying, and in the moment that they ceased, the soul of Rabbi Judah departed to its eternal rest.

Earlier this year an elderly woman with advanced cancer arrived in our Emergency Department from a nursing facility where she had developed a fever and respiratory distress. She was critically ill, and unable to express her own wishes about what we should do.  The information we had from her nursing facility was that she was "full code", although during a recent hospitalization here her physicians and she had agreed on a "DNAR" (Do Not Attempt Resuscitation) order.  And even though she had been our patient in the past, staff in the ED had no documentation of her having a health care proxy, so they had no one they could clearly turn to to ask what she would want us to do.

Can you think of any health care bill that bipartisan members of today's House of Representatives could join in supporting?

Your doctor obviously can only take care of you the way you would want if s/he talks to you about your preferences.  And then the results of this conversation need to be documented in your medical record, so that your wishes are known and readily available to any other doctor who might need to make decisions -- especially if there's a sudden crisis and you have arrived at a hospital, unable to speak for yourself.  

The researchers came up with a standard form, which was inserted in patients’ electronic health records. It asked just a few questions: Does the patient have any “expressed wishes” about how much care he wants or doesn’t? Where are those preferences recorded — in a living will, a durable power of attorney, a P.O.L.S.T. form (which would be scanned into the record). Or are they expressed orally?

The researchers’ form requests a brief summary: He doesn’t want to be resuscitated or intubated? She wants a feeding tube but not a ventilator? Or she wants “all available care?” Does he have a designated decision maker? What is that person’s name and phone number, and what language does he or she speak?

If residents recorded this information for at least 75 percent of discharged patients, for three of the four quarters in the academic year, they each got a $400 bonus. If not, they didn’t.

End of life decision-making can be agonizingly hard, especially when we haven't had "The Conversation" with our loved one.  

The son, quiet for most of the meeting, broke the silence and, with a hint of anger and a big dollop of frustration, asked the one question I had dreaded being asked the most: “Doc, give it to me straight. If this were your mother, what would you do?” 

And then, slowly, the family started sharing stories of the woman we had met only a few hours before, unconscious and intubated. She loved being independent, would hate for people to open doors for her or hold her hand as she tried to get up, they told us. She loved the sun, the beach. She loved walking, loved being out and about. She would never, ever want to go to a nursing home. Never ever. They pulled out a picture of her lounging on a chair, sipping lemonade.

We then told them that based on a combination of her vital signs and lab values, as well as our clinical judgment, that while we could hope for some progress, it would likely not be enough to allow her any real shot at experiencing life outside a nursing facility again.

The daughters shared another glance with their brother. Their shoulders were now less tense, their eyes less teary. The room seemed to be filled with memories of a woman who had lived life well. They turned to us and asked us to make her comfortable, and to turn off the breathing machine. 

I hope that Dr. Warraich's wisdom is read widely by doctors and nurses, who are so often asked "What if it was YOUR mother?".  But his reflections about how to respond to this question are just as relevant to anyone who is asked a similar question by a friend or neighbor, which sooner or later may be most of us. 

The news of the Marathon Day horrors in Boston reached me in Lambarene, Gabon, where exactly 100 years ago this month Dr. Albert Schweitzer and his wife Helene Breslau arrived to open the African "village hospital" that gained him fame throughout the world.

"The end of my grandmother's life proved to be a nightmare", wrote Janet Lynch Schuster in yesterday's New York Times "Sunday Dialogue: Choosing How We Die", clearly still haunted by the way her grandmother died nearly 20 years ago.  

...Many people in Oregon and Washington, where one can legally die with the help of a physician, get the lethal medication and wind up not using it.  They don't need to.  They have what they need without actually taking the final step: peace of mind, a sense of being in control."

It took a village, my BIDMC colleague Dr. John Halamka wrote in his blog Life as a Healthcare CIO earlier this month, expressing his "Thank You to the Village" as he concluded a deeply-moving series of reports from the front lines of a family crisis, which began in the middle of the recent blizzard in Boston:

On Friday at noon, I received a call from my father's cardiologist that I should fly to Los Angeles urgently -- "your father has had his third heart attack, his heart is pumping at half its usual volume, and the combination of multiple medical problems requires rapid decision making."

20 inches of snow had fallen in Boston on Friday morning, delaying and canceling many flights.

The beginning of Spring break meant that just about every Friday flight was oversold to reveling college students...

John's success in somehow getting a flight to LA that night was good luck.  The fact that he and his family were at least partly prepared for the crisis was not luck, it was good planning:

Given everything that happened in 2012 -- Kathy's breast cancer, my mother's broken hip, and health issues with my father in law, I declared a family goal to have all wills, trusts, powers of attorney, healthcare proxies, and an open discussion of care preferences by the first week of March.  My parents and I worked through a review of their legal documents, an inventory of their preferences, and an accounting of their assets in mid-February so we were well prepared for Friday's events.

As John finds when he arrives at the hospital, "[My father] knows I am here but cannot converse.  Today would have been too late to have discussions about his care preferences."

It's an awkward time to post a blog, but if my journey over the next several days with my father encourages others to prepare for these events...my father's life will have made an even greater impact.  Making a difference is a great legacy.

John's gratitude in his closing "Thank You to the Village" includes his family, their friends, staff at BIDMC who covered all his meetings and phone calls, and many other colleagues.  He cites three "lessons learned":

*Family must come first

*There is no work related urgency that trumps a focus on major life events

*The people who surround you in life make all the difference

*We can never be fully prepared, but if enough others who have been there first have shared their stories, then when it comes our turn we will get through okay.

Thanks, John.  

What would you do if a frail elderly woman collapsed nearby?  Would you rush to start CPR?  Or if you don't know CPR, would you scream for help from someone who can?

Bakersfield fire dispatcher Tracey Halvorson pleaded with the woman on the other end of the line, begging her to start CPR on an elderly woman who was barely breathing.

“It’s a human being,” Halvorson said, speaking quickly. “Is there anybody that’s willing to help this lady and not let her die?”

The woman paused.

“Um, not at this time.”

On a 911 tape released by the Bakersfield Fire Department, the woman on the other end of the line told Halvorson that she was a nurse at Glenwood Gardens, a senior living facility in Bakersfield. But on Tuesday, the nurse refused to give the woman CPR, saying it was against the facility’s policy for staff to do so, according to the tape.

Later news reports included reassuring comments from Lorraine Bayless's family, indicating that she would not have wanted CPR initiated.  They explained that she had chosen to live in a facility without medical staff, and that "it was our beloved mother and grandmother's wish to die naturally and without any kind of life-prolonging intervention."