Some Older Patients Are Treated Not Wisely, but Too Much

By Paula Span

older patientsOver many years, the 77-year-old patient has managed to control hisType 2 diabetes. Thanks in part to daily doses of a drug that reduces blood sugar, his glucose level is a very low 6.5 percent.

Like a lot of older people, he copes with multiple medical conditions, including high blood pressure and severe kidney disease. But with four prescription drugs, plus Tylenol forlower back pain, he’s doing reasonably well.

Oh, and he’s a hypothetical example, concocted by researchers at the University of Michigan and the Veterans Affairs Ann Arbor Healthcare System. They sent this fictional case study to primary-care professionals at Veterans Affairs medical centers across the country and asked a series of questions about the man’s treatment.

The researchers believed their nearly 600 respondents — mostly physicians, but also nurse practitioners and physician assistants — would recognize that such a patient risked developing dangerously low blood sugar, called hypoglycemia. But no. About half these professionals said they wouldn’t worry about potential harm from the man’s rigorous treatment regimen.

Evidence is accumulating that older adults with diabetes, hypertension and other conditions should be treated less aggressively than they commonly are. “Deintensification,” the Michigan researchers have named this approach.

As this and another related recent study have shown, not for the first time, getting that message out to practicing physicians has proved difficult.

“In our health care system, we are all more scared of failing to do something than of doing too much,” said Dr. Jeremy Sussman, a primary care physician and research scientist at the Ann Arbor hospital.

Under current guidelines, most older patients with diabetes don’t have to get their blood sugar to rock bottom; a 7.5 or 8 percent blood glucose level (measured as HbA1c, an average of several recent readings) produces the same benefits as very low glucose. Blood pressure readings, too, should be allowed to rise as patients age — up to 150 millimeters of mercury for systolic pressure. The previous goal was to keep it below 140.

There are good reasons to be less vigilant. In older people with diabetes, for instance, maintaining very low blood sugar — often called “tight control” — can do more harm than good. “People can feel fatigued and weak, get cold sweats, feel like they’re going to pass out,” said Dr. Tanner Caverly, lead author of the Michigan survey, published in JAMA Internal Medicine. Thefainting and falls that may result can have devastating consequences.

Further, a widely cited study called Accord, published in 2008 in The New England Journal of Medicine, found that intensive therapy to reduce blood glucose actually resulted in higher mortality.

Yet a large national study by Dr. Sussman and his colleagues, published last month in JAMA Internal Medicine, reveals how rarely deintensification occurs among patients over age 70.

Reviewing Veterans Affairs data on more than 211,000 patients, the researchers found that fewer than 19 percent of those with very low blood pressure had scaled back their medications. Only 27 percent of those with very low blood sugar had done so.

“There’s been a huge effort to ensure that fewer people are undertreated,” Dr. Sussman said. “Now, maybe we’ve crossed the line and too many people are overtreated.”

Examples of both extremes are easy to find.

Among older adults, substantial proportions still don’t take advantage of vaccines, among the simplest of health protections. A third of those over age 65 didn’t get flu shots last season, according to data from the Centers for Disease Control and Prevention. More than 40 percent haven’t been vaccinated against pneumonia, and fewer than a quarter have gotten the shingles vaccine.

But older Americans receive too many colonoscopies and too many mammograms. Last year, a study found that more than half of nursing home residents with advanced dementia, a terminal disease, were receiving drugs of questionable value; about a fifth took statins to lower cholesterol.

Overtreatment, however, rarely brings the sort of hand-wringing that undertreatment does. You might think it would be welcome news that older diabetics can do well with lower doses of medication, and that in some cases they might be able to stop taking glucose-lowering drugs altogether.

Tight control takes great effort, and it makes sense for young and middle-aged people with diabetes. The benefits accrue slowly, over years, so younger patients are more apt to receive them. The young have stronger bones and better balance, so they are less likely to be injured in the falls that too-low blood sugar can cause.

Older, frailer people with lower life expectancy and many additional health problems face different trade-offs.

“As you get older, the benefits go down and the risks go up,” said Dr. Sei Lee, a geriatrician at the University of California, San Francisco, who has written about the subject for years. “What was good for you at 55 might be bad for you at 75.”

As a member of the American Geriatrics Society’s Choosing Wisely panel, Dr. Lee helped draft its recommendation that a 7 to 7.5 percent blood glucose reading is a reasonable goal for healthy seniors. For those with additional health problems and life expectancies of less than 10 years, the panel suggested a 7.5 to 8 percent goal, rising to 8 to 9 percent for those with many medical conditions and few years ahead.

Given all that, it’s disappointing that more primary care providers in the new Veterans Affairs study never thought to tell our fictional 77-year-old that he could afford to let his blood glucose rise a bit, and maybe eat a cookie once in a while. But sometimes patients themselves resist, especially if they have been dutifully monitoring their disease for years.

Dr. Sussman recalled a veteran, about 80, who took pride in the way he’d managed his illness, testing his blood several times a day, injecting insulin, keeping his glucose below 7. He had lost weight with age, however, so Dr. Sussman suggested he stop insulin shots and begin taking the diabetes drug metformin, which comes in pill form.

The man gave it a try. “But he and his wife never lost their discomfort with doing less than they had been,” Dr. Sussman said. The patient went back to the injections.

At least his doctor had pointed out the option and explained the likely benefits. In the new Veterans Affairs study, nearly 30 percent of respondents said they lacked the time to discuss the risks and benefits. About a quarter said they feared that reducing the fictional patient’s medications could make them vulnerable to a lawsuit.

More than 40 percent worried that higher blood glucose would violate their institutions’ performance measures, the report cards doctors get — even though the Department of Veterans Affairs has never specified a target below 7 percent for these patients.

Just the contrary: The department last year announced a National Hypoglycemic Safety Initiative, changing its approach to diabetes management to avoid intensive treatment when it’s not warranted.

Still, older adults who haven’t reassessed their diabetes or blood pressure regimens for years probably should be asking their doctors if they can or should make changes. The doctors, for now, might not raise the subject themselves.

“It’s one thing to find out about something new and exciting and do it,” Dr. Sussman reflected. “It’s harder, emotionally, to look at something you’ve done for a long time and think, maybe this isn’t so good. And stop.”

Complete Article HERE!

It’s Not Just Middle-Aged Men Who Are Dying Younger


That paper by Angus Deaton and Anne Case about middle-aged white men dying at higher rates seems to be having a second life, so I want to highlight something that I might have buried in my initial post about it: it’s not just middle-aged men. This is right in the paper, with a colorful chart and everything. Every single white age group, from 30 to 65, has seen a big spike in deaths from alcohol, suicide, and drug overdoses:


And it’s white women too:

The change in all-cause mortality for white non-Hispanics 45–54 is largely accounted for by an increasing death rate from external causes, mostly increases in drug and alcohol poisonings and in suicide. (Patterns are similar for men and women when analyzed separately.)

So why is everyone focusing solely on middle-aged men? Because that’s what the paper focuses on. However, the authors make it very clear that every age group is affected:

The focus of this paper is on changes in mortality and morbidity for those aged 45–54. However, as Fig. 4 makes clear, all 5-y age groups between 30–34 and 60–64 have witnessed marked and similar increases in mortality from the sum of drug and alcohol poisoning, suicide, and chronic liver disease and cirrhosis over the period 1999–2013; the midlife group is different only in that the sum of these deaths is large enough that the common growth rate changes the direction of all-cause mortality.

In other words, the phenomenon they describe applies to all white men and women between the ages of 30-65. The only difference among midlife white men is that declining overall mortality has turned into increasing overall mortality. Among other groups, declining mortality presumably turns flat, or perhaps declines less rapidly—though the authors don’t say.

In other words, midlife men make for a more dramatic chart because the line actually changes direction. But there’s nothing magic about zero. If you go from a slope of -5 to -1, that’s still a lot even if the line hasn’t changed direction. What’s more, whatever it is that makes the change in overall mortality bigger for midlife men, it’s not the suicide, alcohol, and drug overdoses that the authors focus on. The chart above makes that clear. In fact, the midlife group appears to have seen a smaller growth in those things than both the younger group and the older groups. This would be clearer if the chart were drawn differently, but since the authors don’t include a table with raw data, I can’t do that.

Bottom line: There’s been a sharp increase in death by suicide/alcohol/drugs among all whites of all age groups from 30-65. Whatever the reason, it’s not something that applies solely to middle-aged white men.

Complete Article HERE!

One Hospital Surprised a Dying Man With a Final Visit From His Beloved Horse



After spending 65 years working with horses, terminal cancer patient Frank Keat’s last request was to be able to say a final goodbye to his favorite horse, Early Morn.

Because Keat’s weak health prevented him from leaving the hospital, he was unable to visit his beloved stables one last time. But the gracious staff at Bodmin Hospital in Cornwall, England, were determined to carry out Keat’s dying wish. The staffers vowed that he would be reunited with Early Morn before it was too late.


And they kept their promise: On October 23, nurses wheeled Keat out onto the hospital’s patio, where his horse companion was waiting for him. Their silent yet emotional encounter made Keat overwhelming happy. For his family members, the surprise visit was bittersweet.

“It was a really nice last gift and I was so delighted it happened,” his son, Tim, told SWNS.


Frank Keat passed away three days after he bid farewell to his prized horse.

Keat’s passion for horses started at the age of 15, when he began working in stables. Later on, he bred horses and spent the latter part of his career serving as a judge for equestrian competitions across England. ​


After Keat was admitted, he enjoyed retelling stories from his equine career to the staff at Bodmin Hospital. ​In more humbling moments, Keat spent his time reminiscing about his friendship with Early Morn.

Fulfilling Keat’s request has been a rewarding experience for nurses like Samantha Russell. “I can honestly say that this is the most memorable day of my career. The emotion was overwhelming and there wasn’t a dry eye on the ward,” Russell told USA Today.

Complete Article HERE!

All In This Together: Coping With Advanced Illness and Dying as a Family

By: Fred Nelson MSW, RSW

“The moment we heard about Dad’s cancer diagnosis, everything changed in our family. My sister has always been kind of withdrawn. Well, she started to take over. I felt like my own world had ground to a halt; I couldn’t do anything useful. My brother just got busier and busier – totally absorbed in anything as long as it had nothing to do with Dad. Our first family dinner together after we got the news: we were like strangers. We didn’t have a clue how to even talk to each other.”

We all have our own ways of responding to and getting through a difficult situation. Sometimes we can predict pretty well what we will feel and how we and others will react. Sometimes it’s a complete surprise – to ourselves and everyone around us. The fact is that we are all affected – subtly or in a big way – when someone in our family is diagnosed with a serious illness. Our outlook on life can change. Our behavior can change. Our roles can change. Naturally, all of this affects how we come together as a family.



‘Family’ is whatever it means to you: a parent and kids; a group of siblings and their partners; a multi-generational extended family; a group of friends who have stuck together through good and bad. That part doesn’t matter. What does matter is that every family, however structured or defined, has its own established roles, rules – generally unspoken – and ways of communicating.

Here are some examples of rules, roles and patterns of communication that may occur within a family:

  • Nobody in the family talks about negative feelings. If you’re sad or angry, keep it to yourself.
  • If you have an issue with someone in the family, don’t talk to them directly; speak to Mum and she’ll deal with it.
  • We catch up on what everyone’s doing on Fridays after work.
  • Uncle Bill always mows the lawn and cleans up after a barbecue.
  • Nobody mentions Peter’s first wife, even when their son is visiting.
  • Only Dad can initiate discussions about family vacations.
  • Nobody ever praises a piece of pottery that wasn’t made by Mum.
  • We all congratulate Chris on his game, even when his team loses.
  • If you need to talk to someone about a disappointment in your life, talk to your big brother.
  • Aunt Julie can’t keep a secret.
  • New Year’s dinner is always at Uncle Remy’s – no exceptions.
  • Amanda is always the one who pushes for us to get together to plan our holiday activities.

family2All of this can be thrown up in the air like a deck of cards when someone in the family gets a serious, life-limiting diagnosis. And what happens when the cards come down? The possibilities are endless as family members:

  • deal in their different ways with strong emotions
  • consider how the future might unfold
  • move, willingly or unwillingly, into roles that have been occupied by someone else
  • work within or challenge established ‘rules’ about gatherings and ways of communicating

Even if individual family members stick pretty much to the roles they have occupied in the past, it is very likely that the intensity of the situation will ‘crank up the volume’ on the ways they interact with one another and force old differences to the surface. For instance:

  • I have never been compensated for the fact that Dad took you into the business and not me.
  • Who said this was my job, anyway?
  • Don’t tell me how I should feel!


Eventually, and sometimes right away, a serious, life-limiting illness means caregiving. Directly or indirectly, someone in the family is likely to become responsible for caregiving. The responsibility may be shared, but often it isn’t. And caregiving can be exhausting – emotionally, physically and financially. The emotional rollercoaster can be extreme (sadness to relief to hurt to fulfilment to guilt to satisfaction to tenderness to anger and resentment to just not knowing how to help). Physical challenges can be immense. (Am I ever going to get a good night’s sleep? How do I get him into this wheelchair?) And while many family caregivers will tell you that the experience is not only doable but life-enriching, tensions are inevitable. For instance, if the needs of a seriously ill family member outstrip the ability of a family caregiver to provide appropriate care. Disagreements over the right course of action are common between the main family caregiver and the person who is ill as well as among family members. Add to this mix, intense feelings, new or entrenched patterns of coping, and new roles, and it may be unrealistic to expect smooth sailing.


First and foremost, the person who is ill should remain the central decision-maker for as long as he or she chooses or is able to be.  It is also important for the person who is ill to decide who will make decisions on his or her behalf if necessary. Even if a single member of the family becomes chiefly responsible for the care of the family member who is ill, it is likely that other family members, perhaps all of them, will need to be included in some important decisions. Financial decisions are a good example, and people avoid them for a variety of reasons. For instance, a person who is dying may not want to face financial issues because doing so would require a genuine acceptance of his or her condition. Or it might mean confronting some differences in the ways individuals in the family see things.

The best advice from people who have been in this situation is to be practical, honest and straightforward. For example:

  • I know that you want to be in control of your affairs and money as you have always been, but I am concerned about the ‘what-ifs’.
  • If you haven’t made these decisions and completed the paperwork, I worry about us not being able to do what is important for you when you are unable to do so.

Telling people what they should do – someone who is dying or another family member – may lead to resistance and is usually not as effective as speaking for ourselves.  (E.g.You need to do this now vs. I am concerned that…)

In many families, there is a tendency to try to protect one another by avoiding frank conversations. If we talk about it, we will take away all hope. Or If we talk about death, it will happen sooner. Or This is just too hard for him/her to talk about, when in fact it might be truer to say, “This is too hard for me to talk about.  While such reservations are common, they can actually leave all involved (the person who is ill and family members) feeling isolated and that their feelings and concerns are not heard or understood. It can take a lot of emotional energy not to say what needs to be said. In the end, expressing ourselves to one another and going through tough times together can free up energy for something more worthwhile and help us feel more connected to one another.


family4Family members are not always on the same page at the best of times. In times of stress, disagreements, conflicts and anger are much more common. Anger often comes from a place of frustration, being misunderstood, being afraid or not being heard or acknowledged. It is a natural reaction to the threat of loss or loss itself. Hurt, fear and feelings of guilt can contribute to anger. Anger often surfaces when we feel insecure or vulnerable.

When everyone is under stress due to a serious illness and an intense caregiving situation, try not to take anger personally. If you can, consider – with as much compassion as you can find within yourself – where the anger is coming from and what feelings or experiences it might be rooted in. Remember that all relationships have a history and that past grievances commonly surface during times of stress. Counselling support can help provide a fresh perspective and help family member talk to and better understand each other, although there certainly are times when differences are too entrenched and individuals are too wounded to resolve issues.

A wise person once said, ‘At any given moment, human beings are doing the best they can.’ The bottom line is knowing what each of us can and cannot take responsibility for, and finding a way to be okay with that.


The presence of conflict doesn’t mean there’s something wrong with you or your family, although it certainly can feel that way. When conflict is making you feel like you or your family are failing, think again of all of the changes that are in play – changes in feelings, roles, family ‘rules’, situations, finances – and the stresses that everyone involved is enduring. In fact, it would be surprising if there were no conflict.

Again, with as much compassion for yourself and others as you can muster, step back, take a breath and consider everything this particular conflict is rooted in. Consider all the places that you and your family members find support – community, professional, through the health care system, friends and family – and figure out how to access them. Consider what you can do and what is simply beyond your control. Make sure to treat yourself with kindness and respect.

After all, you and your family members are dealing with the countless changes and challenges that come with caregiving and loss. There are no perfect solutions. But like other human beings, you are doing the best you can. Looking back on this intense time, you may, like many other families, be surprised by your resourcefulness and resilience.

Complete Article HERE!


Given hypothetical, anything-goes permission to choose from a creepy, unlimited vending machine of endings, what would you select? Should you have the right to choose?

contemplating death



After a particularly gruesome news story — ISIS beheadings, a multicar pileup, a family burnt in their beds during a house fire — I usually get to wondering whether that particular tragic end would be the worst way to go. The surprise, the pain, the fear of impending darkness.

But lately, I’ve been thinking that it’s the opposite question that begs to be asked: what’s the best way to die? Given hypothetical, anything-goes permission to choose from a creepy, unlimited vending machine of endings, what would you select?

If it helps, put yourself in that mindset that comes after a few glasses of wine with friends — your pal asks something dreamy, like where in the whole world you’d love to travel, or, if you could sleep with any celebrity, who would it be? Except this answer is even more personal.

There are lots of ways to look at the query. Would I want to know when I’m going to die, or be taken by surprise? (I mean, as surprising as such an inevitable event can be.) Would I want to be cognizant, so I can really experience dying as a process? Or might it be better to drowse my way through it?

Many surveys suggest that about three-quarters of Americans want to die at home, though the reality is that most Americans, upwards of 68 percent, will die in a hospital or other medicalized environment. Many also say they want to die in bed, but consider what that actually means: just lying there while your heart ticks away, your lungs heave to a stop. Lying around for too long also gets rather uncomfortable — as anyone who’s spent a lazy weekend in bed can tell you — and this raises a further question: should we expect comfort as we exit this life?

Sometimes I think getting sniped while walking down the street is the best way to go. Short, sweet, surprising; no worries, no time for pain. Sure, it’d be traumatic as hell for the people nearby, but who knows — your death might spark a social movement, a yearlong news story that launches media, legal, and criminal justice careers. What a death! It might mean something. Does that matter to you — that your death helps or otherwise changes other people’s lives? If there’s not a point to your death, you might wonder, was there a point to your life?

These are heavy questions — ahem, vital, ones — that don’t seem to come up very often.

I got curious about how other people would answer this question, so I started asking colleagues and friends for their ideal death scenarios (yes, I’m a blast at parties). I heard a wide variety of answers. Skydiving while high on heroin for the second time (because you want to have fun the first time, according to a colleague). Drowning, because he’d heard it was fairly peaceful once the panic clears. Storming a castle and felling enemies with a sword to save a woman, who he then has appreciative sex with, just as he’s taking his dying breaths. (That poor gal!) An ex-boyfriend of mine used to say that the first time he lost bowel control, he’d drive to the Grand Canyon and jump off.

My own non-serious answer is to be tickled to death, sheerly for the punniness of it.


Anecdotally, young men were more fancy-free about their answers, while the older folks and women I spoke with gave more measured answers or sat quietly. Wait, what did you ask? I’d repeat the question. A pause. Hmm.

One old standby came up quite a lot: dying of old age in my bed, surrounded by family. The hospital nurses I asked had a twist on that trope: in bed, surrounded by family, and dying of kidney failure. Among nurses, there was consensus that this is the best way to go if you’re near death and in intensive care — you just fade out and pass, one ICU nurse told me. In the medical community, there’s debate about how calm death by kidney failure actually is, but really, who can you ask?

These answers are all interesting, but my nurse friend got me wondering about people who deal with death on the regular — what do they think about the best death? Do they think about it? Surely hospice workers, physicians, oncologists, “right-to-die” advocates, cancer-cell biologists, bioethicists, and the like have a special view on dying. What might their more-informed criteria be for my “best death” query?

I started with a concept that I think most can agree with — an ideal death should be painless.


Turns out, a painless death is a pretty American way to think about dying.

Jim Cleary, a physician in Madison, Wisconsin, specializes in palliative care, cancer-related pain relief, and discussing difficult diagnoses with patients. “Eighty percent of the world’s population lacks access to opioids,” he tells me. That includes morphine, fentanyl, oxycodone, and many of the other drugs used to soothe patients in the United States. Cleary is director of the World Health Organization’s pain and policy studies group, which is working to get these relief drugs to other nations to help those in need — burn and trauma victims, cancer patients, and women giving birth.

In his work with American cancer patients, he’s careful not to suggest that dying will be comfortable. “I can’t promise ‘pain-free,’” he says. What he can promise is that he’ll try his best to help patients end their lives as they wish. “Listen to your patients,” he tells his colleagues, “they have the answers.”

Cleary says you can lump the different ways we die into categories. The first is the sudden death. “That’s not going to be a reality for most of us,” he’s quick to point out. The other category is the long death, which is what most of us will likely experience. “The reality is death from cancer,” says Cleary, “where you actually know it’s going to happen, and you can say goodbye.”

According to the American Cancer Society, a man’s risk of dying from cancer is 1 in 4, and a woman’s 1 in 5. (It’s important to note that those numbers are just for dying from one of the many types of cancer, from bladder to brain, prostate to ovaries. The odds that a man will develop cancer are 1 in 2; for women, 1 in 3. Reality, indeed.) In long-death cases, most care does not extend life so much as extend the dying process, a fact noted by many end-of-life experts, from surgeon and author Atul Gawande to hospice patients.

Cleary thinks the idea of a “best” death or even a “good” death is a little misleading, as if it’s a competition or something one can fail at. He prefers the term “healthy dying,” which isn’t as oxymoronic as it sounds. To him, healthy dying means that death is “well-prepared for, it’s expected, and other people know about it.”


“We as a society have to do much, much more on accepting death as a normal part of living,” he says. “So rather than even talking about what’s ‘the best way to die,’ how do we normalize dying?” In a country where funeral parlors handle our dead and corpses no longer rest for days in our own parlors at home, we’re rather removed from the whole ordeal.

Still, I press Dr. Cleary to answer the question at hand: How would he choose to die? “Would it be sudden death walking along a beach in Florida?” he ventures, then quickly reconsiders. “But if your family doesn’t know you’re dead — dad goes for a walk or run and doesn’t come back — is that good for them? It may be good for me, but it may not be good for them.”


In many American hospitals, you’ll find representatives from No One Dies Alone (NODA), a nonprofit volunteer organization formed in 2002 by a nurse named Sandra Clark. NODA’s founding principle is that no one is born alone, and no one should die alone, either.

NODA volunteers work in groups of nine. Each carries a pager 24 hours a day during their assigned shifts, so that one of them is always available to attend a death. Usually, a nurse makes the phone call summoning NODA volunteers. The vast majority of people who NODA visits are comatose. But that makes no difference, the principle abides; comatose or not, it’s still important for someone — anyone — to be present.

Anne Gordon, NODA’s current program director, has helped hospitals around the country start the program in their facilities. She has a worldly perspective similar to Cleary’s, and different from the expectations that most Americans have on the topic of death.

“Dying is a process, not [just] the last breath,” says Gordon. If you’re a hospital patient in the process of dying, there’s a specific protocol to qualify for NODA services. You need to be actively dying — estimated to pass in the next day or so. (“Seasoned nurses can tell,” Gordon says, which is why they’re often the ones to page the NODA volunteers.) You must have reached a point where you will not receive any further interventions — that means comfort care only, with a required “do not resuscitate” order. And you must be without family or friends who can keep you company as you pass away.

Nobody? How does it happen that a person has nobody to visit when they die?

“Sometimes a person’s outlived everyone, or they’re estranged,” Gordon explains. Maybe they do have family, but for whatever reason, the loved ones needed to leave, or live far away, or just cannot bear to be present. Some of the patients are homeless and, just as in their healthier days, have no one to comfort them. Whatever the reason, NODA will be there.


As Gordon sees it, death is an act of meaning, and the process — what she calls “the human family coming together” — is an act of intentionality and love. “I find the whole process to be so compelling,” she says. “It’s our shared experience — a key transition we all share.”

Gordon, a Baby Boomer, sees her work and the recent public interest in end-of-life issues as a byproduct of her generation aging — an extension of the consciousness-raising of the 1960s and “one of the good echoes” from that era, she quips. “As we get closer to death, we like to talk about these things.”

There are “death cafes,” informal coffee hours where friends and strangers get together, eat cake, and talk about dying. There are high-demand conferences where people share their personal experiences of loss and grief. There are bestselling books about coming to terms with your own mortality and how to prepare for death — spiritually, familially, and financially. Even Costco, the bulk-retail giant, sells coffins alongside its low-price tire changes and discount cruises. It’s mostly just static noise, though. Death is never fully discussed, only hinted at from the margins.

Gordon believes that now — with Baby Boomers entering retirement, many losing their parents, and many more coming to grips with their own mortality — is the moment to talk through these issues as a culture, to discuss the process of death in specific terms, beyond the anecdotal and platitudinal. “When death is a daily concept,” as it might be in Bhutan, she offers, “it’s not as terrifying. What matters is quality of life.”

When I ask Gordon how she’d like to die, she demurs. “I have no answer. I figure it’ll be what’s appropriate for me.”


Pamela Edgar is an end-of-life doula and drama therapist in Brooklyn, New York. Similar to how birth doulas help pregnant women bring new life to the world, end-of-life doulas help people on their way out.

Edgar grew up with a mom who worked in nursing homes, and young Pamela sometimes tagged along, visiting people at different stages in their lives, including the final ones. As she grew older, Edgar got especially interested in those last months: “What is the kind of relationship that you can have with someone when it might be one of their last new relationships? What can that be like?” she wondered.

Edgar has worked in nursing home dementia units and other late-life facilities for the past eight years. After working in a Veterans Administration hospital during an internship as a creative arts therapist, she requested to go to the hospice unit. (“Nobody ever asks to do that!” she remembers her supervisor replying.) For the past three years, she’s been an end-of-life counselor with Compassion & Choices. The organization is primarily known for advocating right-to-die legislation at the state level, but it also helps anybody seeking assistance to “plan for and achieve a good death.”

“As a drama therapist,” Edgar says softly, “I look a lot at roles that people play in their life, and one of the things that I really see — and this is a little bit related to a good way to die — I see that for a lot of us, a lot of our lives are spent doing. What can we do for other people, how we define ourselves by these roles that are really about what we can do, or what we have. And as people get older, of course, that role system gets smaller, and often people can’t do all the things they used to do. I think it’s really an interesting moment for people then: What is their identity, and who are they now?”

For many, dying becomes about control and autonomy, she says. “Here are the things I still can do and what I can still control are really important for some people.”

Others get spiritual. Edgar shares the example of a patient in his 70s who’d been diagnosed with ALS and lost the ability to do many of the things he loved. “He decided that he was ready, and he and his wife kind of describe it that ‘his spirit had outgrown his body.’ He was on hospice care and he chose to stop eating and drinking, and the wife had a lot of support, and hospice was really excellent and supportive of them. It was a very peaceful passing for him.”

Peaceful. Especially given the circumstances of a degenerative illness, “peaceful” seems like an indispensable criterion for the “best” death.


Edgar has been particularly affected by seeing choice taken away from patients. Many of the people she worked with early in her career wanted to go home but, because of what she calls the country’s “medical model” of dying, never were able to. After helping hundreds of people with their deaths — filing wills, deciding on final treatments, aiding loved ones with the transition — she’s developed an idea of a good death that’s based on her background in psychology. You’ve heard it before: letting go.

“Ultimately, we are going into an unknown,” Edgar says. “Even when people think or have ideas about what’s next, truth is, we don’t have proof. So there is that sense of going into an unknown and do people feel ready — body, mind, and spirit? Are they really ready to go?”

Sometimes, Edgar says, the body and mind are ready, but the person isn’t emotionally there yet. Or vice versa — the person feels spiritually ready, but their body’s still holding on.

“My personal answer for the best way to die is being ready, like being physically, emotionally, spiritually ready to go.”

Before we end our conversation, she stresses a point to me: “Life and death are not opposites,” she says. “We haven’t figured out how to stop either. They’re partners.”


In the autumn of 2014, the story of Brittany Maynard incited conversations on this topic in average American living rooms. Maynard, a 29-year-old newlywed, was diagnosed with an incurable brain cancer that gave her seizures, double vision, headaches, and other terrible symptoms that inevitably would intensify until her almost surely agonizing death.

As she looked at that future, Maynard decided that she wanted to end her life on her own terms with the help of legal medication. Unfortunately, she lived in California, which didn’t allow doctors to write life-ending prescriptions. So Maynard, her husband, and her mother packed up and moved to Oregon, where the right to die is legally recognized.

Through the ordeal, Maynard partnered with Compassion & Choices to spread the word about her journey for a good death. Her story appeared on the cover of People magazine, was featured on CNN, the Meredith Vieira Show, in USA Today, in the op-ed pages of the New York Times — you name it. Such a young woman facing such a terrible fate: it’s compelling, even wrenching, and hard to turn away from.

Disregard your personal beliefs on the morality of this situation for a moment, and think about what you would do in the face of an agonizing terminal diagnosis. Would you seek medical care until the very last breath, demanding chemo from your deathbed? Or would you prefer to go without, letting the disease take its natural course? Which path do you fear the most?

After Brittany Maynard

David Grube is an Oregon family doctor who, in his own words, has “delivered babies and sung at people’s funerals.” He wants to die “feeling perfectly well, and just not wake up.” Over his 35-year career, he has prescribed life-ending drugs to about 30 patients (though “aid in dying,” as it’s often called, only became legal in Oregon — and for the first in time the United States — in 1994). He did not prescribe Maynard’s medication, but he did talk to me about the process of aiding in a patient’s death.

Grube, who is the medical director for Compassion & Choices, says that though many people ask for the drugs, few end up using them. The prescriptions require a psychological evaluation, sign-off from two different physicians, and a 15-day waiting period before they’re available. The fatal dose will be a barbiturate like pentobarbital, a sedative that’s also used in animal euthanasia — it’s the same drug as the “sleeping pill” that killed Marilyn Monroe, Grube notes — or secobarbital, a bitter anesthetic and sleep aid. Someone like Brittany Maynard would likely stir the drug into a glass of juice, drink it, then await its effects.

In her final message to the public, Maynard wrote, “The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type. … Goodbye world. Spread good energy. Pay it forward!” Her husband, Dan Diaz, said that as she took the medication, “The mood in the house was very peaceful, very loving.” Within five minutes, she fell asleep. Then she died.

Grube says that’s usually how it goes with these cases: within an hour or two, the person stops breathing and experiences “a peaceful, simple death.” On the rare occasion when the patient takes the medication with a glass of milk or with a large dose of anticonstipation medication (vanity doesn’t automatically disappear with terminal illness), they will sometimes wake up. But when taken as prescribed, most people who choose to end their life this way will, like Maynard, pass with tranquility. It is, in a word, peaceful.

Another term for Maynard’s act is “physician-assisted suicide,” but Grube rejects that concept wholeheartedly. “They don’t want to die!” he says. “‘Suicide’ is such a harmful word … and words are scalpels; they can be healing, kind, or destructive.” Some of Grube’s allies prefer the term “physician-assisted dying,” while others talk about the “right to die.” Compassion & Choices has settled on its own values-based language to discuss cases like Brittany Maynard: “death with dignity.” Partly due to Maynard’s activism, the California legislature and Governor Jerry Brown passed the “End of Life Option Act” this October, just before the one-year anniversary of her death.

Grube says most people who ask for these prescriptions are educated, motivated, and confident. What they want, he explains, is to determine the timing of their imminent death.

Control. When a disease is controlling your body and mind, when you’ve lost pleasure in the things you once loved, when you’re in pain, when you’re suffering and you fear burdening those around you, when there’s nothing more to do but wait for death, having the power to take — or not take — life-ending drugs can be a supreme comfort. But it’s a fine line of morality.

As a philosopher and bioethicist at Vanderbilt University, John Lachs considers these situations all the time. His mother, Magda, lived to 103, but given her ever-increasing collection of age-related illnesses, he wrote in Contemporary Debates in Bioethics, “living longer seemed to her utterly pointless: the pain, the indignity and the growing communicative isolation overshadowed her native optimism and the joy she had always taken in being alive. She decided that she had had enough and she was ready to die.”


Magda stockpiled prescriptions, ready to overdose on them, but lost them in a move, according to her son. She tried to die by abstaining from food and drink, but, as Lachs put it, “there was enough love of life left in her to make this a regimen she could not sustain.”

Is it okay to help someone else die? Lachs argues that “doctors should help us through every stage of life,” including the final one. Furthermore, exercising freedom — in this case, the freedom of choice to end one’s life — is not the same as following moral rules. “We have the right to terminate our lives even if it is wrong to do so,” Lachs says — with an important caveat. “Healthy young adults who propose to kill themselves cannot demand aid from others. … The situation is altogether different with suicide that is justifiable.”

To Lachs, context is of the utmost importance. “We don’t want people to choose death over life,” he tells me. But when the end is near anyway, and the person is suffering, what’s the argument against it?

  1. The philosopher has developed a set of five standards for the ideal death:
  2. It must be after a person has exhausted his purpose; there’s got to be nothing more for him to truly do.
  3. Corresponding to the loss of purpose is a lessening of energy — mental and physical.
  4. The person’s affairs should be in order — paperwork, wills, goodbyes, all of it.
  5. The person should feel he’s leaving something good behind — “I didn’t live for naught.”
  6. The death should be quick and painless.

Lachs has seen and heard of people who are near death but linger on. “It’s so much better when the other conditions are met and they just pass on,” Lachs says. “Ideally, life is such that it gives you a chance to get ready for death.

“Nobody has ever survived life. The bet is going to be lost. All of life is uncertain. We think it’s not, and contingency is the name of the game. But ultimately, we’re going to have to come to terms with the end of it.”

Magda, Lachs’ mother, finally did pass in the “subterfuge” way that hospice workers sometimes quietly administer: a nurse offered a morphine solution that depressed Magda’s lung function and finally accelerated her death.

What’s the best way to die? It’s a question that Lachs has spent time considering. His favorite answer comes from a medical colleague of his, but it’s an old yarn: being shot to death at 90 years old by an irate husband while biking away from sleeping with the gun-toting man’s wife.

Barring that, Lachs says, he’d like to die having met his own criteria — quickly, of a heart attack.


One of the last people I posed my question to was Doris Benbrook, director of research in gynecologic oncology at the University of Oklahoma. Her specialty is much different from the health care staff I’d spoken to previously — she studies cancer on the cellular level, particularly apoptosis, or programmed cell death. Does the microscopic level of dying give us any other ways to think about the best way to go?

In its most basic sense, a cancer cell over-multiplies and begins causing bodily trouble. “At the organ and tissue level, it eats away at vital organs. It grows, duplicates, divides.” That clogs up organs, cascades into other systems, and makes its body croak. How utterly unfair of something so tiny. Some cancers you barely feel, like the notoriously silent ovarian cancer, while others, like bone cancer, cause immense, deep pain.

Benbrook’s work with apoptosis aims to switch off that growth, to figure out how to flip the cell’s existing kill-switch so it can’t wreak such havoc. Years from now, she hopes, doctors could even use this mechanism as a cancer-prevention method.

Interestingly enough, CPR and other familiar cardiovascular attempts to keep people alive take the opposite tack: “They want to prevent cell death,” Benbrook notes. So there are many different ways to think about what the end of a cell means for the end of the human. But cells die constantly, and a few cells dying here and there don’t kill a person. Even though our cells die with us, she stressed that the microscopic level isn’t the right place to look when considering dying.

Her personal answer to the best way to die, however, was my favorite, if only for its imagery.

“I would like to die by freezing to death,” she says. “Because from what I understand of the process, it’s that you eventually just go numb and don’t feel anything. I have experienced extreme pain. I don’t ever want to do it again. I would like to go peacefully.”

Interesting. But it’s where she’d like to freeze to death that moved me.

“I would think that if I were to just sit on an iceberg floating up in the Arctic Ocean, that it would be a peaceful death. I could look up at the stars, I could think about life, and it could be a good experience.”

The frozen night air blowing over your body. The dead quiet of nature interrupted only by laps of the ocean and the occasional fish flopping out of the water. The icy sensation of your tears freezing as you look up at the Great Bear constellation for the last time. That really doesn’t seem like such a bad way to go.


But Benbrook and I come quickly back to land. “Of course I would like to have my family surrounding me, and the chances that I’m going to go sit up on an iceberg in the Arctic Ocean to die — that is not likely.” She laughs. “I’d probably be laying in a bed surrounded by loved ones. My goal would be to go peacefully.” Back to the beginning.


So I turn to you, brave and patient reader: from the absurd to the probable, how would you like to die? Allow yourself to think about it, in as far as you’re ready to do so. Do you want a breathing tube snaked down your throat if it becomes necessary? Do you want to be fed if you can’t do it yourself? Would you mind dying in a hospital? You can even get down to ambient details — do you want punk music blasting, a warm room, someone rubbing your swollen feet?

Whatever you wish, however deeply you’re willing to think about it, the key is to share your ideas about a good death. Talk to your family, write down what you want, and keep it somewhere they know about. Ask people about it at parties. As anyone who’s made a “pull the plug” decision can tell you, any guidance you leave will be helpful if you can’t speak for yourself on your last day.

This is your last possible decision, after all — better make it a good one.

Complete Article HERE!

Faced with tragic loss, families must face the difficult choice of organ donation

By Joe Smydo

Kelli Jo Lovich
Kelli Jo Lovich visits the grave of her 4-year-old son, Colbee, in mid-October in Butler. “I visit him twice a day, every day,” she said. Colbee was killed in an ATV accident in 2014. Mrs. Lovich decided to donate his organs to help preserve his memory.


That’s what Kelli Jo Lovich said when she was asked to donate the organs of her 4-year-old son, Colbee, who died after suffering severe brain injuries last year in an ATV accident in Butler County.

But Mrs. Lovich recalled that Shannon Pribik, a procurement coordinator with the O’Hara-based Center for Organ Recovery and Education, persisted. Ms. Pribik answered questions, promised there would be minimal trauma to Colbee during organ recovery and agreed to stay by his side until the funeral director arrived for his body.

Mrs. Lovich relented. “He was only 4,” she said of Colbee, “but he loved to help.”

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Procurement coordinators are on the front lines of the nation’s overwhelmed transplant system.

They approach families like the Loviches in the midst of a tragic loss and ask them — when their grief is raw and their spouse, child or sibling is tethered to machines in the intensive care unit — to donate their loved one’s organs so that others can live.

“When you do it for the first time, you feel like you’re invading their space,” said Linda Miller, who operates a University of Toledo graduate training program for coordinators. The program was founded in 2003 with CORE’s support.

The stakes are high.

With more than 122,000 people waiting for transplants, and an average of 22 of them dying each day, coordinators face great pressure to recover organs from the roughly 2 percent of Americans who end their lives in a way — usually of brain injuries while on a hospital ventilator — that makes donation possible. People who die outside of a hospital cannot be donors because their organs deteriorate too quickly.

Sometimes, a family will say, “It’s just not for us. Let the next person be the donor,” said Jonathan Coleman, a coordinator at CORE.

Because donation can occur only in limited situations, he said, coordinators stress a family’s “unique opportunity” to turn its tragedy into somebody else’s second chance at life. Often, advocates say, the decision to donate a loved one’s organs — to let that person live on through others — sustains a family for years.

Yet it can be a tough sell.transplant waiting list

While demand for organs is growing, donation rates have been stagnant, with deceased donors numbering about 8,000 annually for the past decade.

Overall, procurement organizations — CORE is one of 58 nationwide — recover organs from eligible donors 73.6 percent of the time. CORE’s recovery rate is 82.7 percent, according to the Scientific Registry of Transplant Recipients.

If a person had registered as a donor — the option is given at a driver’s license center, among other places — procurement organizations in Pennsylvania and most states have the authority to recover organs even if relatives object. If the person was not registered, coordinators try to persuade the family to donate the organs.

Some people balk at the prospect of organ donation because of fear that doctors will let the prospective donor die to save others waiting in the wings for transplants. While advocates insist that does not happen, procurement organizations have been sued at least twice by those who claim it did.

In 2009, Michael and Teresa Jacobs sued CORE, Hamot Medical Center in Erie, Pa., and several doctors, alleging that their 18-year-old-son, Gregory, who sustained brain injuries in a snowboarding accident, was “intentionally killed … so that his organs could be harvested.” The defendants settled for $1.2 million but contended that they provided proper care.

In 2012, Patrick McMahon, a former coordinator, sued the New York Organ Donor Network, now called LiveOnNY, alleging that the organization pressured him and a doctor to have patients declared brain dead — despite signs of brain activity — so that families could be persuaded to donate organs. In court papers, the donor network denied the allegations. The case is unresolved.

In 2012, Patrick McMahon, a former coordinator, sued the New York Organ Donor Network, now called LiveOnNY, alleging that the organization pressured him and a doctor to have patients declared brain dead — despite signs of brain activity — so that families could be persuaded to donate organs. In court papers, the donor network denied the allegations. The case is unresolved.

■     ■     ■

A former anesthesia tech, Mrs. Lovich once walked in on organ recovery surgery by mistake and blanched at the sight. Her reservations about organ donation were clear; Ms. Pribik recalled Mrs. Lovich’s silence and negative body language.

But Mrs. Lovich said Ms. Pribik’s promise that the cuts to Colbee’s body would be minimal — no greater than that required for regular surgery — softened her resistance to organ donation. Ms. Pribik’s promise to stay with Colbee until the funeral director arrived for his body — Mrs. Lovich didn’t want him “to just sit in a basement somewhere”— also helped. The thought of Colbee helping others moved her aching heart.

Coordinators are trained to address concerns and answer questions while guiding the family toward donation. Families often make special requests, and Ms. Pribik, who has held donor children in her arms, played their favorite songs in the operating room and kept treasured belongings near them, obliges when she can.

The job — with a starting base salary often in the low $60,000 range, Ms. Miller said — can be physically and emotionally grueling. Shifts of 24 hours or longer are common. Many coordinators, including Ms. Pribik, come from the nursing ranks and have experience with end-of-life care.

Ms. Miller said her training program was founded partly because high turnover signaled a need for better job preparation. Of the 84 who graduated from 2004 to 2014, about 78 percent are still in the field, she said, calling that a “very good” rate.

“I tell them every tough thing about this job,” she said.

Some coordinators are embedded in hospitals, but others travel as needed to hospitals in a procurement organization’s service area. CORE’s territory — encompassing five transplant centers, dozens of other hospitals and 46,177 square miles in Western Pennsylvania and parts of West Virginia and New York — is the 22nd largest in the nation.

Research and experience shape the strategies coordinators use. Ms. Miller said she speaks with her students about the “top 20 objections/​concerns families might have” and urges them to ask “probing questions” to get to the root of unspoken fears.

“Then I have a bazillion scenarios, and we role-play, and we role-play, and we role-play,” she said.

A study of Texas cases published last year in the Journal of Trauma and Acute Care Surgery suggested that female coordinators were more effective than males; that a family was more likely to consent to donation if approached by a coordinator of the same race; and that consent rates started to decline after midnight as families became fatigued.

Faced with the loss of a loved one, some families are dazed. Others are angry. “We are prepared for that,” Ms. Miller said.

■     ■     ■

The coordinator may start by reviewing patient data and huddling with the medical team to gain insight into family dynamics. Who are the decision makers? Is there conflict within the family? How are family members coping with the death?

“So far, I’ve never approached two families the same way,” CORE coordinator Wes Washington said.

One coordinator, interviewed for a 2011 article in the Journal of Health Communication, said gathering information about family members from a distance helps to provide important insights “long before they even know who I am.”

The article quoted another coordinator as saying he considers a lab coat a barrier to communication and takes his off before meeting with a family. If he senses that a necktie would create a “class barrier” with a family, he said, he removes that, too.

Families sometimes hesitate about donation because they don’t want further trauma to a loved one’s body. In those cases, coordinators explain that cuts will be as limited as possible and dignified and will not prevent an open-casket viewing. If the loved one died a tragic or unexpected death, the coordinator may point out that an autopsy is likely anyway.

Coordinators often suggest that donation would be a heroic act in keeping with the patient’s good character.

“We don’t ask the family. We offer them the opportunity. I really feel I’m giving them something good,” CORE coordinator Amy Weisgerber said.

Jenna LaSota, a Beaver County native who graduated from the Toledo program in July and works for Kentucky Organ Donor Affiliates, said she has found that families are receptive to the message and “want that good to happen.”

Ms. Pribik said donation also gives a measure of control to families who feel powerless after a tragic, unexpected death.

Some coordinators had used a “presumptive” approach and met a family with the expectation that it will donate after understanding the benefits. Ms. Miller said some in the field consider that approach “too strong” or “somewhat manipulative.” She said she teaches a “sensitive, effective family approach” that allows coordinators to better tailor their strategies to each family.

Some scholars and doctors have criticized coordinators for being too pushy. “Even seemingly caring and compassionate statements — like, ‘Would you like me to give you some time before you make your decision?’ — are discouraged in favor of language that rushes families along the preferred decisional pathway,” Robert Truog, a Harvard Medical School ethicist, wrote in 2012 in the American Journal of Bioethics.

Michael Grodin, a physician and ethicist at Boston University School of Public Health, agreed that coordinators sometimes are overzealous in their quest to keep organs from slipping through their grasp. Better for some organs to go unused than to undermine the public confidence that anchors the transplant system, Dr. Grodin added, calling for more transparent and verifiable standards for diagnosing death-by-brain criteria.

Coordinators say they are committed to ethical treatment of families. “I say, ‘That’s me in there. … What kind of person do I want talking to me and how do I want them talking to me?” CORE’s Mr. Coleman said.

Ms. LaSota said the coordinators she observed during her internships treated families with respect. “They didn’t try to push them or make it a big deal … .”

Some public education campaigns encourage family members to discuss donation so that, in the event of a tragedy, a loved one’s preferences are known and survivors have one fewer decision to make. A sudden death “is not the time to be thinking about organ donation for the first time,” said transplant advocate Kim Harbur of Kansas.

■     ■     ■

After consenting to donation and completing paperwork, family members are encouraged to go home.

But for the coordinator or coordinators — some work in teams — hours of work still are ahead. Organ systems must be evaluated, the data entered into a national database, prospective recipients identified and offers made to transplant centers.

The coordinator also must maintain the condition of a body that, without brain function, becomes unstable. Electrolytes go out of balance and body temperature and blood pressure drop — all changes that can damage the organs.

As soon as possible, procurement organizations give donor families welcome news. Mrs. Lovich learned that Colbee’s kidneys had gone to a man and a woman, both in their late 50s, and his heart valve to an 11-month-old baby.

She has continued to stay in touch with Ms. Pribik and has registered as a donor so that she has a chance to follow Colbee’s example.

“If my son can do it,” she said, “I can do it.”

Complete Article HERE!