Hospitals in Los Angeles County spend more on often-futile care for elderly patients at the end of life than medical centers elsewhere in California, according to a groundbreaking study to be released today.
[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.
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.
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 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.
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.
...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."
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.
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."
But what if the patient is your own mother?
Chronically ill Medicare patients stayed in the hospital longer, saw more doctors and received more intensive-care treatment in Los Angeles than in other metropolitan regions, including Sacramento, San Francisco and San Diego, according to research by Dartmouth Medical School. There was no evidence that the care prolonged patients' lives.
Indeed, the aggressive care in hospitals might actually have hastened their deaths, the authors said, based on previous studies showing that hospitalizations can lead to infections and other deadly complications."It is at least equally plausible that people are being harmed by overuse than that they're benefiting ... and we know that they're spending a lot more money," said Dr. Elliott S. Fisher, a Dartmouth professor and one of the study's authors.
But couldn’t my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup. She had Parkinson’s disease for a decade, and in 2010 she suffered a head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?
If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.
On Friday morning, the final test result came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.
We decided it was time to honor my mom’s wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.
I wondered how our thinking and behavior squared with what I’d written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.
“You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. . . . We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about. I feel very strongly about that.”
Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren’t known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.
“I don’t think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy,” he said, “when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient.”
Mrs. M. found herself at home, unable to breathe. Her husband call 911 and she was rushed by ambulance to the emergency room. As her shortness of breath worsened, all she could say was "help me." The medical team immediately jumped into action ordering blood work and a chest X-ray, placing an IV line and administering antibiotics. Eventually, anesthesia was called to insert a breathing tube and Mrs. M. was placed on a ventilator...
On several occasions, she explained to this nurse that she had no desire to be place on a ventilator again, as she had been so many times in the past. The next time her lung disease worsened, she wanted medicines so that she would not feel the awful sensation of 'air hunger' that accompanied her severe shortness of breath...
A recent op-ed in the NY Times by Dr. Ezekiel Emanuel, titled "Better if not Cheaper Care", reminded me how tragically misguided it is that so many discussions of care near the end of life focus on costs. As Zeke so clearly stresses, and as we underscored in the Report of the Massachusetts Expert Panel on End-of-Life Care, the central issue -- I would say the central moral issue -- isn't cost, it is patient-centered quality. It is unconscionable that our health doesn't take the quality of care near the end of life as seriously as it should -- with the single most important "quality measure" being whether the care provided was what the patient really would have wanted.
Money is, of course, an important dimension of everything in health care, and a legitimate concern. But the most fundamental and urgent "money issue" -- in all of health care, not just at the end of life -- has nothing to do with so-called "rationing" of expensive but beneficial medical interventions. The urgent money problem is that we are so often spending so much money on things of little or no value to the patient, and sometimes on things that are foreseeably harmful. In the last phase of life, this sometimes includes vast sums on expensive, often highly-burdensome, and often ultimately ineffective interventions. The worst of it is when patients and their families would not even want these interventions, if they knew about and had better (and much earlier) access to other options, ones focused on palliative care and hospice, and maximizing time at home.
A disturbing article documenting this problem appeared in the NY Times a few years ago, with a front-page quote from the CEO of UCLA medical center, who said -- apparently with pride -- that 'If you come into this hospital, we're not going to let you die." So I checked, since I suspected that even there human beings are mortal. In fact, over 1,000 patients die every year in his hospital.
Part of the problem is that doctors and hospitals get paid far, far more for intensive hospital-based care than they would if they referred a patient to hospice. So in today's fee-for-service system what often ends up happening?
As I wrote in a letter that the NY Times published:
Dr. David T. Feinberg, chief executive of the U.C.L.A. Medical Center, promises that if you go to his hospital, "we're not going to let you die." Why would a well-intentioned doctor say this to potential patients, violating the most fundamental ethical standards of informed consent?
Guaranteeing hospitals and doctors almost limitless Medicare dollars for intensive-care interventions, however burdensome and unlikely to succeed, may be a quintessentially American affirmation of the sanctity of life -- even if the same resources could be improving the education of our children.
But today's Medicare rewards dishonesty about death. Since the vast majority of Americans would prefer to die peacefully at home, this deprives patients and families of the possibility of informed choice about their last sacred moments together. This is un-American and worse than expensive -- it is morally unconscionable.
The 2009 article about UCLA included a patient care story that I wish I could say wouldn't happen here in Massachusetts, but I know it does:
Dr. Bruce Ferrell, who helps lead the palliative care program [at UCLA], recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never, ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this is as good as it's going to get."
Dr. Ferrell talked with the patient about whether he might want to leave the intensive-care unit to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.
"We do not use the h-word" -- hospice -- "on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."
Massachusetts has led the nation in health care reform, with much work still to do. Currently a major focus is "cost control". But money must never be the first concern. First, middle, and last, we need to ensure that every penny is used only for things that are truly of value to the patient.
The patient chose to leave.
Payment for medical services requires adequate documentation that they are based on the well-informed wishes of patients (or appropriate surrogates), including understanding of life-prolonging and palliative care or hospice alternatives.
Why would you pay for medical services unless you knew that they were what the patient wanted?
Last weekend a patient of ours at BIDMC died in one of our ICUs. She was young (early 60's), with complications from major surgery, kidney failure, and multiple infections. As sad as it was - especially for a deeply devoted brother -- when it became clear that her impending death was inevitable, I was struck by how at peace everyone felt. Very sad, but at peace.
In part it was because, thanks especially to her brother, everyone knew that we were taking care of her the way she would have wanted. She and her brother had spoken openly over the years of her illnesses -- they had had "the conversation" regularly, as her illnesses evolved, and so he never had any serious doubt about what she would be thinking. Whenever she wasn't able to speak for herself, he was able to be her "voice", with confidence. Not long before she died he refused, on her behalf, one more round of surgery that the doctors were willing to do.
The usual way of describing this is that we "respected" her wishes, which we did.
But I don't think that the word "respect" deeply enough captures the way she was treated, or even what our goal should be as professionals caring for patients, or as family members seeking care for our loved ones.
Albert Schweitzer had a different word -- Ehrfurcht in German -- that we translate in English as reverence. He believed that all true "ethics" is anchored in our capacity as human beings to experience and then express a reverence for the lives we find around us.
I once heard Naomi Tutu (Nobel Peace laureate Desmond Tutu's daughter) explain the difference between Dr. Schweitzer's idea of "reverence" and the more common moral language of "respect" and "rights". When someone has "respect" for me and my "rights", she said, there's a kind of distance between us. When someone has "reverence" for me, she continued, they are engaged, they care deeply, we are connected in a way that "respect" for me and my "rights" doesn't capture.
Decisions about "life and death" can be almost overwhelmingly complex. Our failures to save a patient's life, or return them to health, can be almost overwhelmingly sad. And yet after all the complexity, and amidst all of the sadness, there is something deeply gratifying when each of us -- family and professional caregivers -- can look back and say: "she was cared for with reverence."
As we gather this week with loved ones, I suspect that few of us have on our “wish list” a conversation about “death and dying.”
But I also suspect that not a single one of us ever wants to be in the position of having to make a major medical decision on a loved one’s behalf, but have no idea what the person we love would want us to do. Nor does any of us want any loved ones to be in that nearly-impossible position for us – which will likely happen if one day they have to make a major medical decision about us, but we have never told them what we would want them to do.
But somehow we still manage not to talk about it. We don’t even talk to our own doctors – a Massachusetts AARP survey found that only 17% of respondents had ever spoken with their physicians about their end-of-life preferences.
This needs to change – but how?
Sometimes a little bit of humor can help.
Since 1999, at Beth Israel Deaconess Medical Center, we have organized a “Talk Turkey” program each year during the days leading up to Thanksgiving. We first did this in partnership with the Massachusetts Medical Society, using wonderful materials that they provided, which we have since adapted. Each year, staff at tables outside each cafeteria, and in other high-traffic areas, sit by posters with variations on the theme of “It’s Time to Talk Turkey”, handing out information about “advance directives”, and copies of the standard Massachusetts Health Care Proxy form. The form is simple – no lawyer needed – and anyone over 18 can give full legal authority to the person they would want to make medical decisions on their behalf, if it ever becomes necessary.
Every year we distribute over 1,000 Massachusetts Health Care Proxy forms to staff and visitors. Every year, a growing number of people who pass the tables say they don’t need one this year, because they got one (or several) from us in the past. Some even tell us that they and their loved ones have talked about the issue since last year, completed the form, and given copies to their physicians.
Of course, the point is not the form itself, it is the conversation that the form is designed to trigger. The hardest part of “the conversation” is getting started. For people who have stopped by one of our “Talk Turkey” tables, we suggest that one way is simply to say:
“Do you know what they were doing at my hospital this week? Something called “Talk Turkey”… I realized that I’ve never told anyone what I would want if I was ever very sick…”
Some people find, when they are remembering together a family member who has passed away, that it is natural to think about the last phase of that loved one’s life. Was it approached the way s/he would have wanted? What would each of us want for ourselves? How can we make sure our loved ones know?
This year, a conversation could start about why the Question 2 debate about proposed legalization of physician-assisted suicide gained such high profile, even though we know from Oregon that only 2 out of 1,000 people choose that option. It’s obvious that there is intense and widespread interest in what the last phase of life may be like. So a conversation about Question 2 could spark you to say “This is what I would want if I was ever seriously ill – what about you?”
In fact, these conversations are not really about “death and dying” at all. They are about life. And when we have helped each other learn to have “the conversation”, then more and more often at future Thanksgivings, we will be able to look back at the life of a loved one we miss, and say that in the last phase of life “she was taken care of just the way she would have wanted.” And for that, we can be deeply grateful.
So please don’t miss any chances this week to “Talk Turkey.”
And have a Happy Thanksgiving.
I have not heard a single person claim, during debates about Question 2, that the quality of end-of-life care in Massachusetts is acceptable. There is clearly overwhelming agreement that significant improvements are needed. The questions are:
What improvements are most urgent? How can we achieve them?
Tomorrow, millions of Massachusetts voters will be asked to vote on a different question, Question 2:
Should it be legal for "a physician licensed in Massachusetts to prescribe medication, at the request of a terminally-ill patient meeting certain conditions, to end that person's life"?
Question 2 misses the point. It uses the wrong process. It is premature.
Most importantly, there is a better way.
So I will vote NO.
1. Misses the point
Despite our current major shortcomings in end-of-life care, Massachusetts can and should lead the nation in this area. We can and should be guaranteeing what might better be called a "right to care" than a "right to die" -- i.e. a right to care that is compassionate, including symptoms adequately controlled at all times; that ensures dignity, as defined by the patient; and that respects autonomy, i.e. is always based in an understanding of and respect for the patient's wishes.
As a recent Boston Globe editorial explains in detail, Question 2 will do little or nothing to achieve that.
2. Wrong Process
We should not be using a ballot initiative to decide how best to provide health care for people.
A ballot initiative is a poor process for deciding what to do when both issues and possible solutions are complex. Almost everyone who has approached me in recent weeks about Question 2 has been uncertain -- some have been quite wrong -- about exactly what it would do (or not do). No matter what decision is made tomorrow, I will have no confidence that that decision represents the well-informed judgment of the majority of voters.
There were, and are, better approaches. For example, if the law proposed in Question 2 were going through a legislative process, we would have many possibilities for engaging the people of the Commonwealth in public deliberation. This process would likely be far more constructive than much of what we have seen in recent weeks, too often dominated by fear tactics than by facts and reason. Perhaps most importantly, in that public deliberation we would not be forced into the unfortunate yes/no choice we have tomorrow about a proposal that even many supporters agree is imperfect. In a legislative process, each part of a proposed law can be independently scrutinized. Any part that needs improvement or amendment can be changed. And entirely new solutions sometimes emerge.
Even proponents of Question 2 agree that the choice of "assisted suicide" should be a "palliative care option of last resort" -- i.e. an option to be considered "when unacceptable suffering persists for terminally ill patients despite state-of-the-art palliative care."
A moral precondition of promoting a "last resort" option is that reliable access exists to the other options. Too many people in Massachusetts today do not have reliable access to "state-of-the-art palliative care" -- including to effective pain and symptom management, or to the support services they need in order to be able to die peacefully at home, if they prefer.
Passing Question 2 tomorrow will make it possible that some dying patients who want to be at home for their last hours and days will reasonably decide that their best available choice is assisted suicide, even though they might have preferred other options, such as more adequate home-based palliative care services.
The time to consider adding "assisted suicide" to the list of a patient's options will be when we have first guaranteed universal access to "state-of-the-art palliative care".
4. A Better Way
No matter what the outcome is on Question 2 on Tuesday, starting on Wednesday we should all unite to do whatever it takes to ensure that every dying patient in Massachusetts has reliable access to state-of-the-art palliative care, so that every dying patient can be cared for the way s/he would have wanted. One possible starting point is the recommendations of the Massachusetts Expert Panel on End-of-Life Care: The Urgency of Health System Reforms to Ensure Respect for Patients' Wishes and Accountability for Excellence In Care.
Few of the recommendations in that report, submitted to Governor Patrick more than two years ago, have yet been implemented. On Wednesday we should begin. I will suggest some specific ways we can start in my next posting.