Being Mortal: Medicine and What Matters in the End Paperback – September 1, 2015

Doctor & public intellectual Atul Gawande’s 2014 book Being Mortal: Medicine and What Matters in the End basically deserves all the praise it receives. Although it is more about modern aging then about death per se, it certainly fit my mood at the moment. My father, a brain cancer patient in his mid-60s, has been given a push along on this path, so it was still helpful to me to think about aging and decline more generally (significant decline prior to death will happen even in most best-case scenarios — and anyways you can’t know in advance if it really won’t).Being Mortal essentially provides a long, thoughtful, multi-faceted, historically-grounded complaint about the medicalization of aging and death, from someone who really knows and cares. Older adults may become less capable of caring for themselves in various ways, but for the most part they still want the things they always wanted: autonomy in their schedules and surroundings, community, privacy, a specific and concrete reason to get up in the morning. It’s a hell of a demand, to ask people to adjust to completely new surroundings and routines when they’ve never been older and/or sicker.Institutions like hospitals and nursing homes are sort of good at providing some things (specific instances of treatment) and terrible at providing others (emotional warmth, exceptions to the rules, etc). The “assisted living” concept has an interesting history (read it in the book!). Unfortunately, by now assisted living has become a watered-down way station between hospital and nursing home, rather than remaining a bastion of alternative values in elder care as originally conceived.Indeed, the logic of institutions is largely inexorable. If providing meaning (or a lifestyle ripe for it) cannot be measured and incentivized, it will not be reliably or scalably produced.Admittedly, Being Mortal raises more questions than it provides answers. Everyone loves a good news story about kindergarteners who visit nursing homes. But are they changing diapers? Is there really any feasible model for caring for a rapidly aging population other than institutions? And how are you supposed to reward institutions for preserving meaning (an inherently individual task) even while they do the things that institutions are meant to do – get a lot of services provided quickly/reliably in a standardized fashion?No individual person can change the system anyways, but it does seem that (even within the system we’ve got) people are making some crap decisions. Ok, so people are valuing the wrong things – namely, safety over autonomy and the “lottery ticket” of survival/recovery over a better death, sooner. You’re someone who wants to value the right things. So what do you do?You have to do your own research and ask doctors hard questions, because they don’t really like facing imminent death either. You have to broaden your imagination about what acceptable living arrangements for an older person might look like.For instance, maybe you have to accept that your loved one might not get medicine exactly on time or the diet just as the doctor prescribed, because he’s going to sleep in his own bed and raid his own fridge instead. But maybe people don’t want to do those things. Then what?That brings us to my main quibble with Being Mortal: Gawande waffles a bit between what people do value and what they should value. It’s so tempting to talk a big game about what “matters.” But if something really matters, why don’t people choose it? Don’t lots of different things matter? And how could it ever be anything less than very difficult to switch from life mode (focus on safety and the long-term) to end-of-life mode?Perhaps Gawande ought to have sought out some different examples of these values in action. It’s not too hard to imagine a terminal patient forgoing last-ditch treatment, even if it’s not what we’d choose ourselves. It’s much more difficult to imagine a role model of, for instance, an adult child allowing her parent to live in what are widely considered to be “unsafe” living conditions specifically for the sake of that parent’s broader well-being.I want to see examples of real “free-range” senescence. I’d like to read the account of someone who got a call from the police, who found mom passed out in the yard, or even whose parent died in an accidental house fire or something.Many worst-case scenarios (of elders living unaided) will not come to pass, but some certainly will. Then what? Does that change people’s minds, one way or the other? Like trendy “free-range parenting,” it’s probably just much easier said than done. Does that mean a value is going unrealized, or that the person doesn’t hold it in the first place?Maybe many patients don’t even know what they value the most. That’s fair, and part of what palliative care can help them to define, as it becomes increasingly relevant. But maybe there’s nothing satisfying to uncover. There’s no rule that everyone must necessarily value different components of life in a stable fashion. Some people will have very consistent desires, but others will vacillate (especially as they experience the stages of progressing towards death). If you draw a patient’s attention to the dangers of her living independently, she shudders. But when you tell a sad story about a nursing home, she cringes. Maybe she fights with her adult children about where she should go. Maybe she can’t afford her first choice. But that’s simple interpersonal conflict and lack of resources, not unique to old age.You can’t live both independently and in a nursing home. Something’s got to give, and that totally sucks. Some values will be pursued better, and some values will be pursued worse, and some kind of balance must be reached. Care institutions put a finger on the scale, but they didn’t create the problem.The personal economy of value pursuit is simply tricky, from the day we’re born until the day we die. Gawande knows that there are costs associated to the “old” way of dying – it tends to create autonomy for elders at the expense of the younger generation, especially women sandwiched between their children and parents. Many children (and parents) aren’t happy with this anymore, for a variety of reasons, so they face new sets of options (i.e. tradeoffs). Having access to medicine is a double-edged sword, and like many historically-novel conditions humans aren’t inherently well-equipped to deal with it. There’s no technocratic solution to that. If “dying as we lived” is some kind of standard for how we should go, then maybe alone and medicalized makes some sense right now after all.I don’t really have any caveats in recommending this one, though. Just read it (and then try to forget Gawande’s description of how aging bodies feel in a surgeon’s hands as quickly as possible).Book #3 for read about death dot com

This book is a must read for any family experiencing the agony of a terminal illness and the inevitable death of a loved one. My brother recently died of Parkinson’s and I truly wish I had known about this insightful book during his long illness. It would have given all of us guidance as we went through the stages of this very sad, complicated, and debilitating disease

A lovely book about life and death. I work in healthcare and it was a very impactful book. I would highly recommend the read to everyone, even if you’re not in healthcare.

I've read Dr. Gawande's other writings as well, and they are deeply honest, thoughtful, non-arrogant and constructive. This book is no exception. Sadly, it remains true that most "nursing homes" and nursing home programs are hospital-like and organized more for the staff than for the patients (and yes, they ARE patients).While it sounds grand for people with significant disabilities to take risks for themselves, we should not forget that personal injury lawyers are close by and all too willing to sue the facility for an injury that the patients themselves caused. Lawsuits against multi-care facilities interrupt the process of taking care of patients. We live in a litigious society. Surely Dr. Gawande knows this.We need to remember that the primary care-givers of nursing home and extended care facilities are not well paid and many are transient. This is one factor that is ignored by Dr. Gawande in his analysis. Non-professional care givers need to be carefully managed and observed. Having a regimented program for patient care allows senior staff members to more closely observe them to make sure they don't steal or abuse patients under their care. States (like California) have enormous social care costs and increasing the pay of care-givers is not in the sights of the legislatures.Care in this field is like everything else: You get what you pay for. When caregivers last only a week due to the low pay and "difficult" working conditions, another substitute must be trained to take over in their stead. I wish Dr. Gawande had some analysis of this issue and ideas about it.On another subject of his surgeon-father practicing well into his illness from a tumor pressing against his brain-stem and upper spine, his father continued to practice urologic surgery very much longer than I as a physician would have liked to see. The (Sr.) Dr. Gawande was already experiencing numbness in his hands and no doubt his proprioception was diminished. If I were under-going prostate-nerve sparing surgery from him, I would wonder if he could adequately "tease-out" the motor nerves in the cancer ridden prostate.I think it is nice and elegant for people to work well into their disabilities and even serious illness. But when it comes to surgery, I think it would have been better if the Sr. Dr. Gawande had retired from surgery when he realized he was damaged and instead became a lecturer at a local medical school. I'm frankly surprised that this was allowed; and I think it was wrong. His patients had a right to know.All of this is not necessarily off-topic. Care (even the wonderful models Dr. Gawande proposes) must be paid for. There is no such thing as "free-care." Promises from President Obama and TV commercials for Obama-care sometimes suggest that medical care is an entitlement that is free. Well, it's not. It never will be.Dr. Gawande tends to "brush aside" the issue of patient-directed suicide as a kind of cop-out to get away from proper hospice care. Hospices don't always have the answers. In particular in the case of bony metastases and pressure of tumors directly against nerve tissue. Spinal metastases in particular are not well controlled by narcotics. If this is all the hospice has to offer, it is insufficient. Sometimes anesthesiologists can be called upon to implant direct pain control in specific sites if that is indicated. But that is not always possible. Dr. Gawande's own father complained of pain, and even in the face of better medication management, the son admits that pain control was inadequate for his father. These are cases where patient intervention by "premature" death is indicated and appropriate. Spinal metastases are just one example.Patients in every state should be offered the potential of medications to end their lives for inoperable cancers and conditions like advanced emphysema. The dose of narcotics necessary to relieve "air-hunger" is often close to a fatal dose. Some oncologists feel themselves under pressure from DEA to avoid those concentrations. An investigation from DEA will end their career. This may cause them to be skittish about giving the patient what they actually need. If state laws permitted patient-directed suicide this would not be an issue.There are no easy answers. But it is not always "bad" for an elderly, severely compromised patient to be in an extended care environment that "looks and operates" like a hospital. My father-in-law was in such a place and was very happy. He had nice relationships with care-givers who lovingly took care of him, even if the "place looked like a hospital."I do think it is possible to construct an extended care facility like a dormitory with small, localized living areas. But senior staff may not always be available to monitor each of these discrete locations. Care audits are much more difficult to perform. This is not always optimal, even though Dr. Gawande insists that it is.One of the strong points of his book is "conversations" with your elderly patients, whether they be actual patients or your own father and mother. When confronted with this issue for my father-in-law, we simply explained to him that it was "unfair" for his daughter to have to make decisions for him without some kind of "direction." We did not influence his judgment in any way. We explained what a feeding tube was and told him plainly that if he wanted this...this is what we would do. We did our best to present the options without any bias at all. We actually rehearsed it first to make sure we avoided them. We knew what he wanted because he told us. It was not easy. It's not meant to be.It is possible to discuss these painful issues with your elderly parents. Or you could hire an attorney to do it for you, if you fear that you are not "unbiased" enough. We also gave that option to my father-in-law if he wanted. (We would pay for counsel ourselves). He refused, but we would gladly have done it.I don't mean to be overly-critical of a fine book with many fine and heartfelt ideas. Dr. Gawande is a caring, able physician whom I would glad to have as my own. These are just some of my own ideas; and I hope they are reasonable.(Dr.) Michael M. Rosenblatt

I appreciated the stories interwoven with usable information to educate me on the process of living well to the end. A must read for everyone as we will all make the decisions of greatest importance on how to end our own book of life.

A very good book for helping us understand the elderly, the importance for caring for our own as they grow old, the effect that aging and illness has on a person, and helping us sympathize, love and care for them. I cared for my mother as she died. This book emphasizes the importance of character growth in the caretakers. My growth during that time and what I got from it was exponential to what my mother got from it. Our society needs this kind of growth that comes from caring for others.

I Highly recommend this book. Beautifully written.Very pleased with the product, seller and delivery.

Just amazing. Mad Dog describes every step of his leadership journey from 2nd Lt. to Sec. of Defense. A great book for experienced or aspiring leaders. "Be polite, be professional, have a plan to kill everyone you meet."