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Tag: End of Life Care

Two Patients Coded

My recent post on end-of-life care issues, “What if they had had to pay?,” generated a lot of comments in the blogosphere and beyond.  One intensive care doctor sent me a particularly poignant note.  It gives a good sense of what it is like on this person’s side of the bed.  The note re-emphasizes the need for better end-of-life planning, for the sake of patients, families, and providers.

Here’s my day so far.  This is my first day of a 7-day stretch in a tertiary ICU. The average census in this ICU is 10, but today we have had to surge to 15.

Let me stop right there.  This is doctor (and nurse) shorthand for, “I expect to be very busy, very tired, and very stressed out.  I am going to have to make some highly critical clinical judgments, sometimes with very little time to react.  I don’t know anything about these patients beyond what is in the charts and what our care team sees and hears for themselves.”

Two patients today coded in our hospital. One family wants “everything” done, and seemed shocked to learn that I don’t think it is right to provide “everything.” The other family wished someone from the healthcare team had bothered to ask them what their 89 year old dad would really like to accomplish from his hospital stay before he tried to die. We decided to let him finish dying.

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The Last Six Months of Life

This discussion was inspired by the two women I owe my life to: my mother and my wife.

I cannot identify the citation for this factoid, but the assertion has become engrained in the lore of medical urban myth: “50% of healthcare costs are incurred in the last 6 months of life.” (or some similar figure) There are other less arresting but more concrete statistics to be found. For example, according to Health Affairs, July 2001 vol. 20 no. 4 188-195, one quarter of Medicare outlays are for the last year of life. Another more recent discussion concerned the various factors that influence that spending in the last 6 months. An article in the Annals of Internal Medicine for February 15, 2011 vol. 154 no. 4 235-242 describes determinants of healthcare spending and points out that regional variation in medical care does not account for as much variation as is sometimes pretended.

A concise summary of that article by one consulting firm states “Individual characteristics such as black or hispanic race, severe functional impairment, having Medicare Supplement coverage, suffering from certain chronic diseases or from four or more, were associated with higher spending. Others, such as having a relative live nearby or having dementia, are associated with lower spending. And some, such as having an advance directive, sex, marital status, education, net worth, or religiosity, appeared to have no relationship. Altogether, patient characteristics account for 10% of the variation in spending in the last 6 months of life.” (Quoted from Kevin Roche at vitaadvisors.com) Yet even with all this taken into account, patient and regional factors accounted for only 15% of the variation.There seems to be a major subtext to all of this discussion about the last six months of life, whether the topic is cost, ethical issues, quality of life, or whatever. The unstated message is “WE ARE WASTING MONEY ON FUTILE CARE!”. The implication seems to be, “couldn’t we devote these scarce medical resources to more beneficial use?” and “Why are we prolonging suffering and poor quality of life at such great expense to so little gain?” I ask myself these same questions whenever I walk down the corridor of the ICU to see a consult, past room after room of people on ventilators, bloated, mittened and tubed beyond our ability to recognize them as the same individuals seen in the photos I sometimes see pasted to the wall opposite the bed. “Don’t we know”, I ask, ”when to cease and decist?

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Occupy with Grace

occupy_with_grace_logoEvery Thanksgiving, Engage With Grace has a blog rally asking everyone to take time to start that most difficult of conversations–what do you want to happen near the end of your life? And as ever THCB is honored to take part — Matthew Holt

Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.

Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.

Smart people (like our good friend Susannah Fox have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about – it’s an issue we have the luxury of being able to hold hands about.

It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.

It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.

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How to Avoid Death in the ICU

Some­thing I learned as a medical intern is that there are worse things than dying.

As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-​​stage kidney disease, cancer (maybe), heart failure, bac­teria in his blood and no con­sciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncom­fortable, cur­tained com­partment didn’t seem like a good place for resting.

An attending physician, a smart guy I respected, approached me as I com­pleted the procedure.

“It’s kind of like Dante’s seventh circle,” he noted.

Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just par­tially. His head, hands and feet swelled with fluid. A semi-​​opaque hard-​​plastic instrument linked the man’s trachea, through his paper-​​taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hos­pital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-​​bacterial solution I’d placed over his lower right neck.

“Yeah,” I said as we walked out of the room to review another patient’s chart.

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Sekou & Steve: When Does Death Begin?

This was sensational when I saw it live at TEDMED and it’s even more amazing second time around. Sekou & Steve do 18 minutes of beat poetry & intensity–“we know when life ends, but when does death begin!

Death Panels Everyone Can Live With

Chief among Sarah Palin’s assaults on truth and reason is her contention that providing reimbursement for end-of-life planning sessions with a health care provider is tantamount to a “death panel” where a “bureaucrat can decide based on a subjective judgment of [a person’s] ‘level of productivity in society,’ whether they are worthy of health care.”

A Health Affairs article (Palliative Care Consultation Teams Cut Hospital Costs for Medicaid Beneficiaries) makes a far more level-headed and evidence-based contribution to the discussion. The authors studies the use of palliative care teams at four urban hospitals in New York State. To be clear on what these teams do:

Palliative care aims to relieve suffering and improve quality of life for patients with advanced illness and for their families. It does so through assessing and treating pain and other symptoms; communicating about care goals and providing support for complex medical decision making; providing practical, spiritual, and psychosocial support; coordinating care; and offering bereavement services.

Palliative care is provided in conjunction with all other appropriate medical treatments, including curative and life-prolonging therapies. It is optimally delivered through an interdisciplinary team consisting of appropriately trained physicians, nurses, and social workers, with support and contributions from other professionals as indicated.Continue reading…

The Ultimate Sacrifice

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers.Continue reading…

To Die Well

Everyone liked him.  Though his later years (the only ones in which I knew him) took away his ability to do most things, and though he was in great pain every day, it was easy to see the mischief in his eyes.  The subtle humor was still there, coming out of a man who was weak, in pain, dying.

She lived for him.  She was always telling me of his pain, frustrated with the fact that he didn’t tell me enough.  She was anxious about each complaint of his, wondering if this was the one that would take him away from her.  Many of her problems were driven by this anxiety and fears, and she spent many hours in my office giving witness to them through her tears.

As his health failed, I wondered at her future.  He was the center of her life, the source of her energy, joy, purpose.  How could she manage life without him?  How could she, who had so much lived off of the care of this wonderful man, find meaning and purpose in a life without his calming presence?

Then he died.

I saw her in the office recently, and was amazed at the look in her eyes.  It wasn’t the empty, lonely look I was expecting.  It wasn’t the worried, helpless look that I had seen so many times.  It was peaceful, content.

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Engage with Grace

This is the full text of Alexandra Drane's talk about Engage with Grace at TEDMED. I'm so proud of Alex for what she's done and her talk was outstanding–Matthew Holt

So when I heard that I was going to be speaking with all of you about end of life, I was a little sad at first…even though end of life is an obsession of mine….because TedMed is such a sexy event, and speaking here is such an honor. I wanted to talk with you about something like vitality – feeling alive, being empowered, taking life into your own hands…but then it hit me… that’s what end of life actually is – that’s what it can be when it’s done well.

But … It’s not usually.  70% of people want to die at home, only 30% do.

Here’s another stat you might not have thought about recently – You only die once.  Think about that for one second – You only die once. Not my words – Atul Gawande’s in his incredible essay on end of life – ‘Letting Go’–  which I am now declaring as mandatory reading for each and every person attending TedMed.

End of life in the US has somehow failed to become personal. It’s like this thing we put on a shelf and ignore.  And getting what you want at end of life has become synonymous with filling out forms and getting waivers and going to some lawyers office where you pay a lot of money and get excited when you get to keep the pen.

But that’s not what it’s about. Not at all. Let me tell you a story.

Once upon a time there was this extraordinary woman named Za – short for Rosaria. Za was first generation Italian, breathtaking to look at, driven to become a pharmacist – the first in her family to go to college – and of course she was also human…She loved to enjoy…spending money she didn’t always have, generous to a fault. She was madly in love with her husband John and her two year old daughter Alessia, the apple of her eye. Deep within Za welled this enormous sense of joy – a deep gratitude for the life she had. As it turned out, deep within her also lived cancer – and not just any cancer – but the terrible and unforgiving brain cancer Glioblastoma – described by one of her surgeons as whip cream in a sponge – virtually impossible to eradicate. The seven month battle Za waged against her illness was a mighty one – she endured two massive brain surgeries, radiation, chemotherapy, all the related humiliations – but the cancer didn’t really care.

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Advance Directives 101 – Do Not Call 911

This is the first in a series of posts on the nuts + bolts problems we face in health care. As I stated in my post initiating this effort, my goal is sidestep the current health care reform maelstrom and discuss specific issues that in themselves pose a discrete problem to us relative to health care quality, cost, or outcomes. Although policy reform is needed to solve any number of the nuts + bolts problems we face in health care, many of these problems require only changes in our behavior. From my perspective, if we are going to even start to move this mountain we are going to have to foster change from within the system. That change is going to have to come from all of us as a society and as patients, families, health care providers, health care organizations, and influential health care managers and executives. It’s not just about policy. It’s not about the government ‘against’ the private sector. It’s about each of us taking our own personal and social responsibility to do the right thing. The problem in the current political climate with the health care policy debate is that the real issues all too often get subverted. The travesty that momentarily turned end of life issues, quality of life, and palliative care, into ‘death panels’ is Exhibit A. It has been well characterized on The Health Care Blog by Bob Wachter with references to excellent articles in The New York Times and Joe Klein’s piece in Time. Like so many issues in health care reform the hysteria that ‘government’ was posed to step in and dictate our options as to how we would die and what final options we might have is sadly misplaced. Reality holds its own sadness because too few of us get to die the death we would choose and when we do choose our death it’s the current health care system and our trusted friends and family who inadvertently subvert our best intentions. From a nuts + bolts perspective reform is not going to begin to solve this problem. The facts are pretty clear: we spend too many precious health care resources unnecessarily late in life; we decide far to late what we do and do not want modern medicine to do for us; and, far too few of us get to die with the peace and dignity everyone deserves. The solution lies not in the health care system, nor does the blame. The solution and the blame lies with each of us and until we are willing and able to rationally decide what we do and do not want modern medicine to do for us, someone else will be forced to. Those decisions, all of them well intended, will inevitably be made under duress. Death does not need to, and should not be that way. Let’s not confuse this with ‘rights’ or a ‘right to die.’ The concept that we have a ‘right’ to something just muddies the whole health care debate. The issue is respect. How do we respect the dignity of someone who is facing death with the kindness, gentleness, and support they deserve? Blame is easily passed around. Jane Brody, who does an otherwise excellent job of patient advocacy in her Jane Brody’s Guide to the Great Beyond blames a fair amount of the problem on physicians. Ms. Brody states that while we are all ‘death deniers,’ those of us who are physicians ‘are the worst of the lot’. She goes on the say that, ‘Many people go into medicine because they are so afraid of death.’ I disagree, but when she goes on to state that there is insufficient training in medical school to prepare us for the responsibility we will face, I don’t fault her. From my front-line emergency room perspective, the problem we face is much simpler and the blame more universally shared. The problem is that at the time of crisis, the time when life-or-death decisions have to be made by each of us as a patient, friend, family member, care provider, or physician, our sane, rational individual wishes as a patient are not represented by anyone in the room. As patients we have abdicated that responsibility to someone else, often someone who has never met us before, and has no way to know who we are, what we believe, how our faith informs us, or what we want. In addition, in pain and frustration we may ask a friend, family member, care provider, or physician to do something that conflicts with what they believe or their faith informs them. Without our explicit consent its unfair to ask others to take the responsibility for these often painful and heart rending decisions. In the end (literally) no one is satisfied with the outcome. The obvious solution seems to be that each of us should make a rational and informed decision relative to death before anyone else has to make decisions for us. It’s surprisingly simple – how much and what kinds of medical care do we or do we not want? The general advice goes something like this: 1) talk with our doctor and decide what level of medical care we want given a set of health care scenarios; 2) have a lawyer draw up a Living Will for us and sign it; 3) fill out a set of advance directives; 4) identify one or more people we trust as our durable power of attorney to make medical care decisions for us if we are incapacitated; and, 5) discuss all the above with our family. All of this should be done, and a search of Google, Yahoo!, or Microsoft’s Bing for ‘advance directives’ brings up links to excellent resources that can walk us through the process. The nuts + bolts problem, however, lies in whether or not we make those decisions and whether or not other people, when we are incapacitated, adhere to those decisions. Ezekiel Emanuel, demonized in the ‘death panel’ hysteria, was the senior author on a very important paper in The New England Journal of Medicine that showed that patients would refuse ‘life-sustaining treatments in 71 percent of their responses to options in the four scenarios (coma with chance of recovery, 57 percent; persistent vegetative state, 85 percent; dementia, 79 percent; and dementia with a terminal illness, 87 percent),’ but that less than 18% of respondents actually had advance directives. Even more disappointing is that Hardin and Yusufaly point out in the Archives of Internal Medicine that 65% of decisions by physicians are not consistent with the patients advance directive. The sample sizes are small and the cases are hypothetical, but it is consistent with what we see in day-to-day medical practice. Then, Ditto, et. al. point out, also in the Archives of Internal Medicine, that advance directives had essentially no effect on the accuracy of decisions by designated surrogates (for example those friends or family we designate as our health care Durable Power of Attorney). So we have a significant majority of patients who want to limit their medical care if incapacitated but they never get around to specifying that fact. To add insult to injury, in the majority of cases even when we do designate our wishes, physicians and our own designated friends and family potentially ignore them. On the other hand, the article from Ditto is not completely negative in that it shows that our chosen surrogates are not completely wrong in the decisions they make even if they do not know our explicit wishes. To spin that a little better, they often make the right decision. It is a situation where families and patients might know better. In this light, Singer, et. al. in another article in the Archives over a decade ago, called for us to rethink advance care planning (ACP). The authors’ Introduction and Conclusions are telling, particularly in light of the ‘death panel’ hysteria:

Introduction: Death is often preceded by the use of life-sustaining treatments, but patients are often incapable of making decisions about treatment at such times. Therefore, people sometimes use advance care planning (ACP) to make these decisions ahead of time. Four traditional academic assumptions about ACP have been advocated in various sources in the medical literature: (1) the purpose of ACP is preparing for incapacity; (2) ACP is based on the ethical principle of autonomy and the exercise of control; (3) the focus of ACP is completing written advance directive (AD) forms; and (4) ACP occurs within the context of the physician-patient relationship.

Conclusions: The traditional academic assumptions are not fully supported from the perspective of patients involved in ACP. The patients we interviewed stated that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.

It all boils down to an issue of communication. We should not look at advance directives as the sole outcome of advance care planning but rather should understand that when all is said and done what we wish must be well understood, and our friends, family, and physicians must promise that they will honor our wishes. Yes we need advance directives, yes we need them in our wallet, on a necklace or bracelet, and if we’re permanently incapacitated, the best thing we could possibly do is have the following tattooed on our chest: Do Not Call 911, Do Not Resuscitate, No Antibiotics, No Feeding Tube, Please Keep Me Pain Free + At Peace. Perhaps our insurance company or fellow taxpayers could reimburse our family for that? In stark contrast to the hysteria generated around ‘death panels,’ each of us can ultimately control how we die, other than through trauma, natural disaster, or violence, no matter what the intent of anyone else or legislation or the fear of governmental mandates. It’s not an issue of correctly filling out a questionnaire or just going over a set of pre-canned scenarios. Life and health care are never that simple. To reiterate, it’s about communication. Only if we chose not to communicate through advance directives or open discussions do we relinquish those rights. Yes, talk to your doctor, but far more importantly talk with your friends and families. When I sit in the physicians’ workroom in our emergency room I sit with physicians who are liberal, middle-of-the-road, conservative, democrat, republican, libertarian, atheist, Catholic, born again Christians, reform and conservative Jews, Buddhist, Muslim, and every belief, flavor, and shade of color imaginable. What is critical about us as physicians, however, is that unlike politicians and religious leaders we are not in the emergency room to hold you to our beliefs, faith, and politics. As a profession we treat patients according to their beliefs and faith. It is a matter of professional ethics and how we are trained. If you are a Jehovah’s Witness and do not want a transfusion on religious grounds we will not honor that request, we will do everything in our power to help you without violating that tenant. In fact, Jehovah’s Witnesses have been instrumental in changing how we deal with transfusions and when we do or do not give them no matter what your faith. They have taught us things that we and other patients need to forever thank them for. The same professionalism applies to any decision patients make about how they want to be treated and about how much care they do or do not want us to provide. We will do anything to help someone even if it’s to respect their right to decline intervention. We all have heartfelt stories but one that I will always remember is a patient who came in with their family unconscious in respiratory distress and was emergently intubated. When the patient woke up a short while later, on a ventilator, the patient let the attending critical care physicians know that they wanted the endotracheal tube removed immediately. The patient, according to herself and her family, had fought her disease long and hard and did not, under any circumstances want to be on a ventilator again. The tube was removed, the patient was left with her family and she died peacefully. Medical science could have prolonged her life and she might have gotten back off the ventilator but she had been where no one else in that room ever had. She was profoundly courageous and I didn’t see a single physician, nurse, respiratory therapist, or anyone involved who did not have the utmost respect for her and her decision or who did not have tears in their eyes. Remember, please, that the physicians who must work with with each of us, our family, and our friends when we die are often not our personal physicians or the sub-specialists who know us and have been treating us. It’s not the pat scenarios seen on advance directives templates. It’s the messiness of auto accidents, natural disasters, cancer, stroke, dementia, heart disease, and the vagaries of life that hit us. Fill out advance directives, such as the template provided by groups such as www.medicaldirective.org, but then go the next step and talk about your faith and your core beliefs with someone who shares them or will respect them and designate that person as the ultimate decision maker, available 24 hours a day, to make critical life or death decisions for you. Put that person’s name and contact information, again with 24 hour availability, in your wallet, on a bracelet, necklace, or tattooed on your chest. I’m not kidding about the tattoo, particularly if we fall victim to such severe head injury or insult, dementia, or incapacitation we would not want to burden anyone else with our care. And let’s be careful of placing our moral or ethical judgement on others. This does not have to be, unless any one of us so chooses, about a right to die or euthanasia. This is about how much medical care each of us does or does not want. For example, antibiotics. It seems easy, ‘Yes, sure, I would want antibiotics. Why not? That’s an easy decision!’ In reality, however, it shouldn’t be. Why shouldn’t we choose, of our own volition, to die peacefully from a commonly and effectively treated illness like pneumonia or a urinary tract infection if we are otherwise incapacitated? If I am brain injured or demented, bed-bound, and cannot recognize my family why should I have to have 911 called when I get a cough and a fever? On the other hand if I want that care that also has to be respected as a valid choice. That is what we all need to talk about and again, I stress to each and everyone to talk to about your faith and your core beliefs with someone who shares them or will respect them and designate that person as the ultimate decision maker, available 24 hours a day, to make critical life or death decisions for you. There are many books and texts that can assist us in those discussions. My own personal bias is Sogyal Rinpoche’s The Tibetan Book of Living and Dying but there are many others. I am a great fan of film and there is an entire genre, or rather multiple genres that touch on this subject but two recent films, both from 2006, come to mind, the director Susanne Bier’s Danish film Efter brylluppet (After the Wedding) and the director Sarah Polley’s Canadian film Away from Her. After the Wedding is ultimately about thinking about someone other than ourselves and Away from Her about what it’s like to lose someone to dementia before they die. When you watch Away from Her remember that Sarah Polley was only 26 years old when she wrote and directed it, based on Alice Munro’s short story, The Bear Came Over the Mountain. One of things that gets in the way of our thinking clearly and rationally about death is the ethical and moral quandary we face when we place our intellect or own faith in the way of what should be our respect for each other’s individual beliefs. We belittle death when we think we can apply our self-righteous superiority to someone else. The holocaust, so painfully miscast in the current health care debate, remains the ultimate reminder of the horrors we have wrought with that self-righteousness. There are many, many phenomenal films about the holocaust, but when it comes to death and to the moral and ethical decisions we each must make for ourselves, the director and actor Tim Blake Nelson’s, The Grey Zone stands out. When you are cocksure of yourself, when you know in any situation what you would do, when you think your moral and ethical judgment are above reproach, sit down and watch this film. Respect people, respect their beliefs, and have the utmost respect for them when it comes to death. Communicate. It’s critical and it’s the personal responsibility of each of us. Rick Peters is an emergency physician, founder and former CEO of the EHR vendors Oceania (now Cerner) and iTrust (now Medplexus), and the PBM PTRX. He has been integrally involved in health care standards and health care consulting.

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