A friend of mine has been living well with lung cancer for five years — working, running several miles a day, traveling, doing good stuff with his family, and generally enjoying the pleasures of everyday life. He knows the cancer will eventually kill him, but has been making the most of every remaining minute.
Then, a month ago, things suddenly turned dramatically south. Severe shortness of breath, constant coughing, sleeplessness, fatigue, loss of interest, anxiety. My friend figured the jig was finally up — that he was going terminal. We all felt sad in the face of this inevitability. In our different ways, we began the painful process of saying goodbye.
Then things seemed to get even worse. I accompanied my friend to visit his lung doctor — an amiable and thorough man who spent lots of time with us, took a good history, and did many tests.
Continue reading “How Not to Talk to Someone Dying of Cancer”
Filed Under: THCB
Tagged: Doctoring, empathy, Lung cancer, Palliative Care, Patient-Doctor Relationship
Oct 11, 2014
An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home’s garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.
What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?
In a paper published recently in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:
- Is the clinical situation an emergency?
- In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens?
Continue reading “When Is It Appropriate to Ignore an Advance Directive? Is It Ever Appropriate to Ignore a Patient?”
Filed Under: THCB
Tagged: Advance directive, Eric Widera, Geriatrics, Palliative Care
Jun 12, 2013
She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.
She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.
Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.
My patient was lucky. She’d lived to 94, and had supportive children who were involved in her care. Her son had long ago been designated as power-of-attorney for her health care. This meant officially that his decisions regarding her care were binding. She was not capable of making sound decisions, medical or otherwise.
The patient had been under the care of a geriatrician. His office chart told me that the option of hospice and palliative care had been discussed with the family. They were interested in learning more; the son had agreed that “Do Not Resuscitate” status was appropriate for his mother. Doing chest compressions on a frail 94 year-old is something none of us want to do.
The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”
Elaine (not her real name) is one of our brightest interns. She’s thinking about going into geriatrics. Situations like this are in many ways the most meaningful for doctors. Too often we stress about minutiae at the expense of the big picture; helping guide a family and patient through a period of critical illness is of true service.
Continue reading “Building a Better Health Care System: End of Life Care – A Case Study”
Filed Under: THCB, The Vault
Tagged: DNR, End of Life Care, Hip Replacement, Hospice, John Schumann, Palliative Care
Jan 1, 2013
The human capacity to deny reality is one of our defining characteristics. Evolutionarily, it has often served us well, inspiring us to press onward against long odds. Without denial, the American settlers might have aborted their westward trek somewhere around Pittsburgh; Steve Jobs might thrown up his hands after the demise of the Lisa; and Martin Luther King’s famous speech might have been entitled, “I Have a Strategic Plan and a Draft Budget.”
Yet when danger or failure is just around the corner, denial can be dysfunctional (see Karl Rove on Fox News), even suicidal (see climate change and Superstorm Sandy).
Healthcare is no exception. Emerging evidence suggests that patients and their surrogates frequently engage in massive denial when it comes to prognosis near the end of life. While understandable – denial is often the way that people remove the “less” from “hopeless” – it can lead to terrible decisions, with bad consequences for both the individual patient and society.
First, there is evidence that individuals charged with making decisions for their loved ones (“surrogate decision-makers”) simply don’t believe that physicians can prognosticate accurately. In a 2009 study, UCSF’s Lucas Zier found that nearly two-thirds of surrogates gave little credence to their physicians’ predictions of futility. Driven by this skepticism, one-in-three would elect continued life-sustaining treatments even after the doctor offered their loved one a less than 1% chance of survival.
In a more recent study by Zier and colleagues, 80 surrogates of critically ill patients were given hypothetical prognostic statements regarding their loved ones. The statements ranged from “he will definitely survive” to “he will definitely not survive,” with 14 statements in between (including some that offered percentages, such as “he has a [10%, or a 50%, or a 90%] chance of survival”). After hearing these statements, surrogates were asked to interpret them and offer their own survival estimates.
When the prognosis was optimistic (“definitely survive” or “90%” survival odds), surrogates’ estimates were in sync with those of the physicians. But when the prognosis was pessimistic (“definitely not survive” or “he has a 5% chance of surviving”), surrogates’ interpretations took a sharp turn toward optimism. For example, surrogates believed that when the doctor offered a 5% survival chance, the patient’s true chance of living was at least three times that; some thought it was as high as 40%. Remarkably, when asked later to explain this discordance, many surrogates struggled. Said one, “I’m not coming up with good words to explain this [trend] because I was not aware I was doing this.” The authors identified two main themes to explain their findings: surrogates’ need to be optimistic in the face of serious illness (either as a coping mechanism for themselves or to buck up their loved one), and surrogates’ beliefs that their loved one possessed attributes unknown to the physician, attributes that would result in better-than-predicted survival (the “he’s a fighter” argument).
Continue reading “Denying Reality About Bad Prognoses”
Filed Under: OP-ED, THCB
Tagged: Bob Wachter, End of life decisions, futile care, life-sustaining treatments, Lucas Zier, optimism, Palliative Care, Prognosis, serious illness, surrogate decision makers, survival odds
Nov 19, 2012
Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes—the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing—she said that if she were going to have a stroke, she knew which type she would prefer: “I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”
She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death—and their fear of ending up like some of our patients—in regular discussions of plans for DNRtattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”
Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit.
We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke. But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband.
You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth.
Continue reading “End of the Line in the ICU”
Filed Under: THCB, The Vault
Tagged: Cancer, DNR, DNR tattoos, End of life decisions, futile care, ICU, Kristen McConnell, Nursing, Palliative Care
Nov 16, 2012
Recently a patient with advanced lung cancer was admitted to a local hospital. Pain in his abdomen was diagnosed as a gallbladder infection.
Because he had metastatic cancer, in addition to the new problem, the patient and family decided that if things deteriorated he should not be given CPR or put on a respirator. A Do Not Resuscitate (DNR) order was entered in his chart. Treatment for the gallbladder was continued, but it was decided that there was a line that the doctors would not cross.
This made sense to me.
Try conventional therapy, but if he was too weak to recover, then do not continue treatment which could cause more suffering than benefit. Give him the opportunity to survive the gallbladder problem, but respect the terminal nature of the greater disease. We were all gratified when his pain and fever went away, and he recovered from the emergency.
When we were discharging him from the hospital, a surprising thing occurred.
The patient and family requested that since he had survived the infection, that the DNR be reversed. They decided that when a sudden new major medical complication occurred, that CPR be performed and he would be placed on a respirator. The clear protective line vanished.
In difficult lengthy discussions with the patient and family, it became clear that they were riding tides of emotion. When things looked better, they focused on life and “cure.” When things grew worse, they were ready to withdraw. They became defensive and angry at the suggestion that this decision might cause suffering. We were not able to redefine limits to his care.
Continue reading “Crossing the Line”
Filed Under: THCB
Tagged: CPR, DNR, James Salwitz, Lung cancer, Oncology, Palliative Care, The Insider's Guide To Health Care
Apr 24, 2012
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 “Death Panels Everyone Can Live With”
Filed Under: OP-ED
Tagged: David Williams, Death panels, End of Life Care, Palliative Care
Mar 22, 2011
Did you read yesterday’s New York Times article by Anemona Hartocollis, entitled “Helping Patients Face Death, She Fought to Live“?
It was about a palliative care doctor who faced her own end-of-life issues in a very different manner from the way she would have advised many of her patients.
[A]s the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”
She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.
While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival.
It is never right to be judgmental about these matters. Each person faces this kind of situation in his or her unique way, and we have no right to dispute the choices people make.
But I was struck by how this doctor personified the public policy debate that surrounds terminally ill patients. Here’s a an example of that kind of discussion from Canada (single payer, government run system!):
The high cost of dying has more to do with soaring health care costs than the aging population does, according to the Canadian Institute of Actuaries. In its submission to the Romanow commission on the future of health care, the institute said that 30 to 50 per cent of total lifetime health care expenditures occur in the last six months of life. Noting the sensitivity of the subject, the group suggested greater use of less expensive palliative care and living wills.
Dr. Pardi’s experience shows how hard it is to go from a policy-level discussion of such matters to the decisions made by individual patients and their families. Without giving credence to the nasty and politically inspired debate about “death panels,” the ambiguity in such situations suggests the difficulty in adopting formulistic approaches to the decisions around end-of-life care.
Besides abortion, it is hard to think of a part of medical practice that is more likely to be politically divisive and personally uncomfortable. Given that, is it worth the debate? Alternatively, how can we best have a productive discussion about it?
Filed Under: Uncategorized
Tagged: Palliative Care, Patients, Paul Levy, Physicians, Policy
Apr 5, 2010
We’re continuing a tradition at THCB started last year. Asking you to take a moment this weekend to discuss your desires for how to live the end of your life as meaningfully as possible–If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here Matthew Holt
Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.
It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:
Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.
Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.
One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.
Wishing you and yours a holiday that’s fulfilling in all the right ways.
(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )
Filed Under: Uncategorized
Tagged: Engage with Grace, Palliative Care, Uncategorized
Nov 26, 2009
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.
Filed Under: Uncategorized
Tagged: End of Life Care, Living Will, Palliative Care, Physicians, Rick Peters
Sep 17, 2009