The Miracle of Candice
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
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.
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.
Human Suffering, Health Insurance, and a "Miracle"
From: Lachlan
Forrow, MD
Sent: Thursday, February 27, 2014 7:16 AM
To: Dreyfus, Andrew;Schultz, Eric
Cc: Nancy Turnbull
Subject: Quick/simple but truly urgent need for you to show how great
(and fast) your organization's caring can be
Andrew/Eric:
I (actually a patient I am caring for at BIDMC) need one or both of you to show how quickly you can fix a small problem.
1. The Problem
My patient is a 40 year old woman (BC/BS subscriber; listed in our computer as "Federal Employee PPO w policy #xxxxxxxxx). She is hospitalized with a major stroke (leaving her almost totally paralyzed on one side of her body) that we have found is the result of a hypercoagulable state caused by widely-metastatic pancreatic cancer.
Every day of her likely-limited remaining life really, really matters.
She needs to start rehab immediately, but her BC/BS policy reportedly does not cover Hebrew Rehab, her preferred place.
Her wife is an HSPH employee and HPHC subscriber who is now trying to add the pt to her HSPH/HPHC plan.
2. The Solution
Actually, I see two.
a. BC/BS could immediately approve Hebrew Rehab for her.
b. HPHC could immediately add her to her wife's HSPH plan.
3. Request to You Two -- Compete for the Fastest Solution
I would like you to compete to see which of your two organizations can solve the problem the fastest.
I suspect that a "solution" will count as winning this competition if I just have something in writing by email certifying that the problem will be solved and that the pt can be transferred to Hebrew Rehab, even if there are some bureaucratic details that will take slightly longer.
If there is anything anyone in your organization needs from me, please have someone email me immediately, or call my cell phone.
If there is anything anyone needs from HSPH, please have them contact Nancy Turnbull there, whom I have copied on this message.
4. Gratitude
Even before you respond, I am sitting here in my kitchen on my laptop marvelling at how wonderful it is that here in Massachusetts we have two health plans like yours. You'll both understand, I hope, when I use the term "Schweitzer-spirited" as the highest form of praise.
Thanks in advance for any help you or one of your staff people can give.
gratefully,
Lachlan
"The greatest thing is to give thanks for
everything. He who has learned this knows what it means to live."
-- Dr. Albert Schweitzer (1875-1975)
From:
Dreyfus, Andrew
Sent: Thursday, February 27, 2014 7:26 AM
To: Forrow,Lachlan (HMFP - Medicine);Eric Schultz
Cc: Nancy Turnbull
Subject: RE: Quick/simple but truly urgent need for you to show how
great (and fast) your organization's caring can be
Since she is our member, let’ see if we can solve the problem
this morning.
From: Lachlan Forrow
Sent: Thursday, February 27, 2014 7:32 AM
To: Dreyfus, Andrew; Schultz, Eric
Cc: Nancy Turnbull
Subject: RE: Quick/simple but truly urgent need for you to show how
great (and fast) your organization's caring can be
Great. I had told her and her wife that we would solve this by 4pm (24h after the problem was identified). I'll now hope for noon.
thanks, thanks, thanks,
Lachlan
From: Eric Schultz Sent:
Thursday,
February 27, 2014 7:44 AM To:
Forrow,Lachlan;Andrew
Dreyfus Cc:
Nancy
Turnbull Subject:
RE:
Quick/simple but truly urgent need for you to show how great (and fast) your
organization's caring can be |
Hope all goes well with your patient Lachlan.
Andrew. If you need any coordination with Harvard Pilgrim, please contact my
office directly. Thanks.
Eric
EXCERPTED From: “AZ” [staff person at BC/BS]
Sent: Thursday, February 27, 2014 10:59 AM
To: Forrow,Lachlan (HMFP - Medicine);Nancy Turnbull
Subject: RE: Quick/simple but truly urgent need for you to show how
great (and fast) your organization's caring can be
[Excerpt from original email]
Dr. Forrow and Nancy,
Andrew asked me to get back to you both with what we’ve learned. Blue Cross has not received any requests for discharge… Hebrew Rehab is indeed in our FEP network, and our initial review is that at this point she would be approved for discharge to there if that request had come in and that is the place she and her doctors want her to go.
Our apologies for the miscommunication. While it’s true that historically there was an FEP exclusion for long term acute care, that is no longer the case. Maybe there was confusion about this…
“AZ”
From: Forrow,Lachlan (HMFP - Medicine)
Sent: Thursday, February 27, 2014 11:36 AM
To: Eric Schultz; Dreyfus, Andrew
Cc: Nancy Turnbull; “AZ”@bcbsma.com'
Subject: CONGRATULATIONS!!!
To EVERYONE! (Andrew, “AZ”, BC/BS; Eric and HPHC; “XX” and HSPH; and most of all this patient and her family)
Problem solved at 10:59, 61 minutes ahead of the noon goal, and 5 hours and 1 minute ahead of what people thought was the unrealistic goal of 4pm.
Mornings like this make being in health care in Massachusetts a true joy. Please let me know if in the future there is ever a way in which I can help any of you with something.
Gratefully,
Lachlan
◊
I titled this blog entry "Human Suffering, Health Insurance, and a 'Miracle'" because when I first announced we would solve the problem within 24 hours more than one person said "that would take a miracle". And afterward I heard several people refer to me as "a miracle-worker". I looked up "miracle" and found here this definition: "an extraordinary event manifesting divine intervention in human affairs." But I don't think anything in this story had anything to do with "divine intervention"; it was just real people taking the suffering of a patient (and the patient's family) seriously.
I said I would draw three conclusions, so here are three "lessons" I think this story tells us.
1. Human suffering in hospitals is not just caused by "disease", but sometimes by our health system.
2. Sometimes human suffering can be alleviated much faster than anyone might have thought possible, especially if we just decide that allowing the suffering to continue is unacceptable.
3. Leaders of health insurance companies (or at least of two insurance companies in Massachusetts) care as much about preventing and alleviating suffering as you and I do.
On not giving what a patient what he "wants"
The "true story" of "Mrs. Rodriguez"
Ted Kennedy Would Have Loved Mrs. Rodriguez
Medical "Science" v. Maternal "Instincts": No Good Answer?
◊
Dear Dr. Forrow,I read your article in the Boston Globe, January 28, 2014. I then read other articles posted on your web sites. One discussed the family of Jahi McMath – “When is Someone Dead? Biology, Humanity, and the Law” – posted January 20, 2014. In one paragraph you quote a professor of bioethics commenting on her family’s views:“There is a word for this: crazy.”You take a much more humane attitude to the family in such an ordeal and that is why I am writing to you.In 1979 my family was in the same situation. My child had a cardiac arrest during an operation and the loss of oxygen caused brain damage. He was transferred to MGH PICU and to the care of Dr. David Todres.All tests showed that there was no brain function – the lack of oxygen had totally destroyed his brain. His body had ‘postured’ – rigid and contracted into a fetal position. His eyelids were contracted and his eyes were ‘bare’ showing his pupils were fixed. There was no response to any stimulus.Dr. Samuel Kim said such cases are best left to the instincts of the mother. My child remained in this state for weeks. Today he is out skiing while I write this. We stayed in touch with Todres and he was delighted to follow the progress over the years. We have overcome nearly all the ‘nevers’.With all best wishes.Sincerely,Joy S.
When You Don't Like the Answer, Change the Question
Invitation to Dialogue: Caring for "Brain Dead" Patients, and Their Families
When is Someone Dead? Nightmares in Texas

“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.”
When is Someone Dead? Biology, Humanity, and The Law
Doctors "Showing Others the Way"? It's Hard for Us, Too
[Doctors] have a clear advantage over many of us. They have seen death up close. They understand their choices, and they have access to the best that medicine has to offer.
"As a doctor, you know how to ask for things," he said. But as a patient, Dr. Billings said he had learned how difficult it can be to push for all the information needed. "It's hard to ask those questions," he said. "It's hard to get answers."
"We pay for another day in I.C.U....But we don't pay for people to understand what their goals and values are. We don't pay doctors to help patients think about their goals and values and then develop a plan."
The front door at Dr. McKinley's big house was wide open recently. Friends and caregivers came and went. Her hospice bed sat in the living room. Since she stopped treatment, she was spending her time writing, being with her family, gazing at her plants. Dr. McKinley knew she was going to die, and she knew how she wanted it to go."It's not a decision I would change," Dr. McKinley said. "If you asked me 700 times I wouldn't change it, because it is the right one for me."Dr. McKinley died Nov. 9, at home, where she wanted to be.
Ensuring Patients Know Their Choices -- Patient Family Advisory Councils (PFACs) Can Help
The commissioner shall adopt regulations requiring each licensed hospital, skilled nursing facility, health center or assisted living facility to distribute to appropriate patients in its care information regarding the availability of palliative care and end-of-life options.
If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate for the patient, including, but not limited to: (i) the range of options appropriate for the patient; (ii) the prognosis, risks and benefits of the various options; and (iii) the patient’s legal rights to comprehensive pain and symptom management at the end-of-life.
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.
...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.
Wisdom from our Faith Traditions
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.
The "4 R's" of Respecting Patients' Preferences
Can Faith Communities Help Us Find Common Ground on Health Care?
Is Knowing a Patient's Allergies More Important than Knowing Their Goals of Care?
Too Good to be True? An Important Bipartisan Health Care Bill in Congress!
Is Money The Key To Motivating Your Doctor to Talk to You?
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.
"What if it was YOUR mother?"
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?”
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.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.
Albert Schweitzer's Legacy -- A Centennial Beacon of Hope
Helping people understand end-of-life choices -- are pictures better than words?
Reverence for Life, Shared Humanity, and Hope
Still haunted by a grandmother's suffering
...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."
Catholic leaders...need to lay down the law about standards our church has set for care at the end of life...Bishops should say, "I will take very seriously cases of untreated pain as a violation of Catholic ethical guidelines. Dying in untreated pain is an offense against God and against humanity."
A Father's Last Days, the Way He Would Have Wanted
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...
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.
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.
*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.
When in Doubt, Try to Save a Life
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."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.
The nation's largest trade group for senior living facilities has called for its members to review policies that employees might interpret as edicts to not cooperate with emergency responders.
"It was a complete tragedy," said Maribeth Bersani, senior vice president of the Assisted Living Federation of America. "Our members are now looking at their policies to make sure they are clear. Whether they have one to initiate (CPR) or not, they should be responsive to what the 911 person tells them to do."
About the author
Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »Have you had the conversation?

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