I Asked Doctors How They Would Prefer To Die

What care do doctors want to have when they reach the end of their lives?


Isobel El-Shanawany, GP

“The hospital is my safe place. When I had my baby, I wanted the labour ward. I wanted to hear the beeps, people rushing around, that makes me feel secure. But I know full well that hospital is not a nice place when you’re 80 years old and dying.

“I’m 36. It’s so difficult to think of yourself as an 80-year-old frail person. Knowing what I know, I think I’d want less intervention than most patients seem to want. Patients have watched ridiculous programmes on telly, and think that CPR does work, and that they can be brought back from the dead and have a lovely happy life. In reality, it doesn’t happen.

“I wouldn’t want to go to intensive care unless they knew that I had a reversible cause and the outlook was good. I certainly wouldn’t want artificial feeding. It’s hard to look ahead. Now, as the mother of a 3-year-old who needs me, I’d probably say I want everything possible done just in case the outlook could be good and I could be there for him, but trying to picture myself as an 80-year-old is quite different. I think if you were to ask most doctors where they would want to die, they’d say at home, with the people who love them.

“On my first job, I just didn’t understand why with one patient we weren’t doing everything we could be doing, and my consultant said, ‘You have to learn when you’re prolonging life and when you’re prolonging death.’ It sounds cheesy, but it’s true, and it’s a fine line. So much of what we can do does prolong death, and prolongs pain.”

Kate Stein, child and adolescent psychiatrist

“What would I want? It depends. If I was a little old lady, and I was really fragile and I’d had a good innings, I think I wouldn’t particularly want the resus, the whole caboodle, because you crack people’s ribs and it’s really quite undignified and you very rarely get them back. But of course I’d want people to try their absolute hardest if I had some weird cardiac problem and I suddenly collapsed next week. I’d really want people to work hard on me in that case.

“For all the cardiac arrests that I saw in A&E, I never saw anyone come back, and it was always people who’d been dead for quite a long time. There was one girl who was young, my age; she was epileptic and had had a seizure in the bath. It was awful. I think we tried to resuscitate her for literally an hour, but it was obvious that she was dead on arrival.

“I’ve cracked ribs before, and it’s not nice. The sound of a cracking rib is haunting, and it happens, especially with the big guys who do CPR in A&E. It doesn’t happen every time, but it often does, and it’s not very nice.

“As doctors you see the practicalities of these interventions, of tube feeding and ventilation and so on. You’re not shielded from that stuff. I’ve always said that if I were to develop some chronic thing, god forbid, like motor neurone or something, I’d definitely want to have the option of going to Dignitas and being able to control it in my own way. I’m sure that’s been guided by my experience as a doctor. Personally, I’d rather have that option, so my last moments can be with my loved ones, drinking my favourite wine, listening to my favourite music, rather than in a grotty hospital somewhere.”

Anonymous, GP

“I’ve been involved in countless attempts to resuscitate patients, with varying degrees of success. I have also had to care for people kept alive solely with feeding tubes, living in nursing homes, rarely visited by family.

“I wouldn’t want CPR unless I have the good fortune to keel over in a district general hospital or outside an ambulance station. I have seen too many partially successful resusses that have resulted in significant damage and next to no quality of life for the patients involved. Often the resus attempt is done for the benefit of the relatives in attendance. Resus on TV gives a skewed idea of success rates, unless they have the magic touch on Holby City. If I’m in a coma, I would prefer that, once all reversible causes have been eliminated, no artificial feeding be instituted and that I be allowed to drift away in a haze of opiates.

“I strongly believe that my job as a doctor is to attempt to cure illness, when possible, but [also] to recognise when the time has come to shift emphasis and then ensure that the life my patient has left is as symptom-free and pain-free as possible – following a full and frank discussion with the patient.

“My own father had the foresight to arrange a lasting power of attorney – six weeks before he died, spookily enough. As part of this process we discussed what his wishes were in the event of various scenarios. When his abdominal aortic aneurysm ruptured six weeks later I was able to inform the A&E staff of his wish NOT to be resuscitated and he was kept alive long enough for all his children to be in attendance to say their last goodbyes. I would strongly urge everyone to set this process in motion and have this conversation.”

Pascale Lane, paediatric nephrologist

“I’m only 54 and I hope this doesn’t come up for some time! However, I certainly would not want a lot of the heroics that are offered in current intensive care.

“When I have what will likely be my terminal illness, I don’t want CPR or other measures. If I’m in a coma, I don’t want to be kept alive with feeding tubes or other artificial means. These treatments often prolong dying rather than adding any meaningful period of life.”

Rachel Boyce, GP

“I’m 38, I have a young family, and I’m in good health. If I had a severe and acute illness tomorrow, I’d hope someone would attempt to save me, because there’s a realistic chance of living a useful life. Fast-forward 40 years, it would be a different story. Because of what I’ve seen, I would not want to end up on intensive care unit in my seventies. I would be horrified to be put through what patients are put through. If someone has a massive heart attack on a hospital ward or at home, they are already dead. CPR can bring them back to life, but they don’t sit up and rub their chests saying ‘phew’. They will end up with a tube in their trachea, lines coming out of them. Many who do survive have brain damage. The media has a lot to answer for in terms of public perception of the success of CPR.

“Similarly, if I were diagnosed with cancer, I would think very carefully about whether to go through treatment. If I had something with a good cure rate, bring it on. But if I had, say, an oesophageal or pancreatic tumour, I would think hard before putting myself through any chemo or radiotherapy. These treatments are grim, might buy you a few months, but a lot of the time are futile. I am often staggered at what patients are put through in the hope of buying a few poor quality months of life.

“My grandfather had a massive stroke during heart surgery in his eighties and he ended up in a nursing home for two years, bed-bound, only eating puréed food. Was I glad he survived the operation? Not really. If he’d died from his stroke, we wouldn’t have had a chance to say goodbye, but dear god, he wouldn’t have suffered the way he did. I don’t actually have an advanced directive [aka living will] but I would definitely get one if I were diagnosed with MS or cancer or have a stroke. I would also seriously consider the Dignitas route, if euthanasia is not legalised in this country, but that’s another article…”

Anonymous, pharmaceutical physician

“Doctors have a jaded view of the various end-of-life interventions. This is mainly because we’ve seen how ineffective and brutal they often are. I think every medic will carry with them to the grave the sound/sensation of fracturing a bunch of ribs in an aged chest during a bout of (invariably unsuccessful) CPR. It’s profoundly unpleasant, believe me. CPR really only saves lives when young, healthy people who suffer cardiac arrest out of the blue. If someone is old and unwell then a good outcome is extremely unlikely. I think that’s why most medics I know would be “do not resuscitate” if they were in hospital as an elderly patient.

“It’s a more complex when it comes to interventions like antibiotics, IV fluids, or food. That’s all about quality of life. I generally think docs are a bit more aware that delaying the inevitable is not necessarily a good thing, if that involves prolonging suffering. However, I think people in general are a bit more educated about that too. I get the impression that relatives are a bit more proactive when it comes to discussing end of life plans nowadays. These ‘end-of-life discussions’ are a very hot topic in medicine and a particularly tricky aspect of dealing with elderly or unwell patients.

“If I was fit and had a treatable illness, then they could do whatever they could. With a terminal illness and underlying poor health (e.g. if I’m very elderly) then I would not want any CPR, that’s for damn sure. I would want IV fluids, as dehydration is miserable, and I would like to make a decision about antibiotics on an infection-by-infection basis. I don’t think I would want nasogastric [tube up the nose] feeding, other than on an extremely temporary basis. A life where I can’t chew/savour food is probably not a life worth living.”

This doctor also sent a link to this research into how doctors’ experience affects their end-of-life decisions, and how often they end up doing things for patients which they wouldn’t want done themselves.

Natalie Silvey, trainee anaesthetist

“A commonly heard phrase when discussing what a patient would want when critically unwell is that they would ‘want everything done’. The longer I am a doctor, the more I worry about what that patient or their relatives think ‘everything’ is. I am becoming more and more clear about the things I wouldn’t want done if I should fall unwell suddenly. Which is why talking about death and end-of-life care is so important.

“If I had an acute medical condition that was reversible, then I would agree to most treatments. But I have been clear with my family that I wouldn’t want things like CPR, artificial feeding, or prolonged ventilation if I were to become unwell and if the doctors and others looking after me thought my chances were poor.

“CPR on TV drives me mad. It is completely unrealistic, and having been to many cardiac arrests now you see the reality, and I don’t think I would want that unless there was an easily reversible cause (which there very often isn’t). Of course, some people survive a cardiac arrest and go on to do very well. It isn’t an exact science, but I do know that I don’t want huge heroics unless there is a very good chance of survival. Perhaps it is because of seeing a lot of patients die in different ways and looking after them in a variety of settings; perhaps it is a fear of loss of control. But I do want to make an advance directive and I have spoken to my family about the type of things I would want. For example, I’m very clear that if there was any way I could donate my organs I would definitely want that.

“I just don’t want heroics. I want good pain relief and other symptom control, and not to be alone.”

Anonymous, consultant in emergency medicine

“I would want CPR, with the caveat that it’s a question of how futile it is. If I had a simple cardiac arrest, if my heart stopped but everything else was fine, then yes, I’d probably want it, because I’d have a pretty good predicted outcome. If, however, I’d been unwell for some time, and my kidneys had gone, and my lungs had gone, and because of that my heart stopped, then the chances of a meaningful recovery are much lower. Following a cardiac arrest you’re likely to head to ITU [intensive therapy unit], you’re likely to be there for some time, you’re likely looking at muscle wastage, and possibly pneumonia from the ventilation system.

“It’s about what your chances of having a meaningful life after it would be. It’s not beyond anyone’s understanding, but doctors have more experience of it. I will frequently be in a position of breaking bad news to somebody, or saying so-and-so’s very ill, and you have a discussion: You tell them that if they get so sick that their heart stops, then we might not be able to get them back, or if we do then they’ll be on an ITU for a long time, and they may not get better. When it’s explained in those terms, people who 20 minutes earlier were saying that Granny wants to hang on to life might start saying that, well, if she can’t tend her garden, maybe she wouldn’t. It’s a question of explaining the realities, explaining what it means to get so sick that your heart stops. If an intervention isn’t going to return me to a quality of life which I’d wish for, then I think that’s probably where the line is drawn.

“Regarding assisted suicide: I would feel very frustrated if I were in a position whereby I was incapacitated and didn’t have the option to end my life. It’s an option which everyone has while they’re walking and talking and moving around, but once you’re stuck in a chair, dependent on feeding tubes, that liberty is taken away from you. That’s not to say that we should have free rein and everyone should be rushing off to Dignitas – it must be done with education and discussion and a sense of fairness – but I think those who say it shouldn’t be an option are usually saying it in a position where you still have that option.”

Complete Article HERE!

For Cancer-Detecting Canines, The Nose Knows

A new clinical trial is set to begin in the United Kingdom using the powerful noses of dogs to detect prostate cancer in humans.

Dr. Claire Guest
Dr. Claire Guest, co-founder of Medical Detection Dogs, says one of her dogs sniffed out her own breast cancer.

While research has been done before, these are the first trials approved by Britain’s National Health Service.

The trials, at the Milton Keynes University Hospital in Buckinghamshire, will use animals from a nonprofit organization called Medical Detection Dogs, co-founded in 2008 by behavioral psychologist Claire Guest.

“What we’ve now discovered is that lots of diseases and conditions — and cancer included — that they actually have different volatile organic compounds, these smelly compounds, that are associated with them,” Guest tells NPR’s Rachel Martin. “And dogs can smell them.”

The dogs offer an inexpensive, noninvasive method to accompany the existing blood tests for prostate cancer, which detect prostate-specific antigen, or PSA, Guest says.

“It’s a low false-negative but a very high false-positive, meaning that 3 out of 4 men that have a raised PSA haven’t got cancer,” she explains. “So the physician has a very difficult decision to make: Which of the four men does he biopsy? What we want to do is provide an additional test — not a test that stands alone but an additional test that runs alongside the current testing, which a physician can use as part of that patient’s picture.”

The samples come to the dogs — the dogs never go to the patient. At the moment, our dogs would be screening about between a 0.5- to 1-ml drop of urine [or 1/5 to 1/10 teaspoon], so a very small amount. In the early days, of course, we know whether the samples have come from a patient with cancer or if the patient has another disease or condition, or is in fact healthy.

They come to the dogs at our training facility. They’re put into a carousel, and the dogs go around smelling samples. If they come across a sample that has a cancer smell, they’ll stop and stare at the sample and wait. They won’t move on.

On dogs’ sense of smell

Dogs, as we know, have got this fantastic sense of smell. They’ve got 300 million sense receptors in their nose — us humans have a sort of poor 5 million. So they are fantastic at smelling odors at very, very low levels.

On how a dog detected Guest’s own breast cancer

I had a dog who was — and still is — our most reliable prostate cancer detector dog. She was working on a project with me, but she started for a short time to be a little bit anxious around me, and one day kept jumping and staring at me and nudging into my chest. I found a lump which I hadn’t been aware of.

I sought medical advice. Actually, that particular lump was fine, but I had very, very deep-seated breast cancer. I had surgery and treatment, and I’m glad to say I’m fully recovered.

But it happened at a time when there was a huge amount of skepticism about whether dogs could in fact add anything the future of the diagnosis of cancer. It kept me focused on the fact that I knew that dogs could offer something, if we can diagnose for cancer by screening noninvasively, screening for volatiles. And of course, this could save thousands of lives in the future.

Complete Article HERE!

Whose Job Is It to Talk to Patients About Death?

In the U.S. health-care system, it’s often unclear who should talk to patients about end-of-life care options. Medicare’s new reimbursement scheme may incentivize doctors to take ownership of those difficult conversations.

talking to a patient about death

By Ricardo Nuila

When Pedro Faust Tzul Menchu, a 45-year-old man with colon cancer, told his oncologist he couldn’t move his leg, a medical alarm bell went off. He’d received chemotherapy a week before, so his other symptoms of vomiting and jaundice weren’t entirely surprising. But the lack of movement in his legs could have been a sign of a spinal-cord compression—when an infection or tumor strangles the nerves running up and down the spine—and potential cord compressions are always treated as an emergency. Pedro was sent straight from the oncology clinic to the hospital, where he was assigned to me as a patient. As Pedro’s hospitalist, the doctor in charge of orchestrating his care, my main job was to figure out if his spinal cord was at risk.

An MRI showed that the cancer had spread to Pedro’s tailbone and throughout his abdomen, but hadn’t damaged his spinal cord. All the specialists I consulted—neurosurgeons, interventional radiologists, more oncologists—recommended a small procedure to protect the collapsed vertebrae so that a future spinal-cord compression might be avoided. When the weekend was over, I handed off Pedro’s care to a partner of mine, another hospitalist, since we typically rotate on Mondays. “They’ll perform the procedure this coming week,” I explained before leaving. Pedro sat up in bed, shook my hand, and thanked me.

Only later did I realize that I never told Pedro how close he now was to dying. His cancer had spread despite two lines of chemotherapy, a previous “debulking” surgery to remove as much of the tumor as possible, and constant surveillance with CT scans. It had nearly claimed the use of his legs. Most likely, it would claim his life within the next six months.

During our first meeting in the hospital’s cancer ward, Pedro confided to me how happy he was to have a doctor who spoke to him in his native Spanish. “It feels so good to be understood,” he said. “Hopefully, with God’s help, you’ll find a way to help me.” We didn’t only talk about his spinal cord. Every time I checked on him, we chatted about his old life in Guatemala.

A couple of times, Pedro arranged it so that his family visited while I made rounds, so I could talk to them all together about the steps that lay ahead. “I’m sorry, but it looks like the cancer has grown,” I told them. I mentioned the upcoming procedures, the possibility of radiation therapy, how the oncologist was considering a third line of chemotherapy, but I admit I never fully connected the dots for them. Telling him what this all meant, how it was almost certain that he would die sooner than he thought, proved too difficult. Like any good doctor, I know how to keep patients focused on the positives—“your family’s all here,” or “it’s good to see you sitting up”—while respecting reality. But something about Pedro, with his calm smile and earnest pleas for my help, made it more difficult than usual to summon up the courage to deliver bad news.

Pedro’s daughter almost seemed to sense my trepidation. She couldn’t have been more than 8 years old, but that didn’t keep her from staring at me with doctor-suspicious eyes, as if I might be the boss of her father’s fate. Whenever she did this, I smiled at her and turned my attention toward Pedro. “Is there anything else I can help you with?”

A couple of days later, I traveled to Chicago to participate in a panel discussion that gathered palliative-care specialists from around the country with patient advocates, ethicists, social workers, and internists (like me), as well as representatives from organizations such as the American Association of Critical-Care Nurses and the Society of Hospital Medicine. The central question: How can we improve end-of-life care in the hospital? While everyone brought a different perspective, what bound us together, caregivers and the bereaved alike, was how much the experience of a hospital death had impacted us—how impersonal it had become, how mechanized, how inhumane. One of the panelists described losing her 36-year-old husband to metastatic colon cancer. Even though she saw a multitude of doctors every day, when her young husband found himself struggling to breathe near the end, none of them dared to discuss the inevitable. “No one told us anything,” she said.

That’s when I thought back to Pedro. By not telling him clearly what the progression of his cancer meant, had I inched him toward a hospitalized death, one that involved shocking his heart if it stopped and pureed food and waking him up every four hours for vital signs? The reason I had been invited to the panel in the first place was an essay I wrote about the difficulty of giving end-of-life care to undocumented patients. I described one patient in particular, a Guatemalan man who did not want to spend his last weeks cycling through the emergency room for pain medications. With the help of the consulate, my colleagues and I arranged to fulfill his dying wish to return to his home country. But the interest and care I’d shown this one patient meant nothing for the next. In not fully explaining Pedro’s prognosis to him, I simply hadn’t done my job.

Or was it my job? Last month, Medicare announced that it would begin to reimburse health-care providers for discussions on end-of-life options, sparking a new debate about who, exactly, should be having those discussions. Whose responsibility is it to clarify how many times a patient wants to be shocked if her heart stops? The critical-care doctor? Who should give the patient a well-informed and plain-spoken prognosis? The oncologist? One of the words that kept coming up in the meeting in Chicago was ownership. In the American medical system, with all its experts, shift work, and moving parts, it can be difficult to place ultimate responsibility for a patient’s care on one individual. That is to say, responsibility is shared—which is how certain duties, like talking with a patient about how close he is to death, can fall through the cracks.

But I can’t help but think that it was I and I alone who failed Pedro. I wasn’t his oncologist, I wasn’t the interventional radiologist, but of all his doctors, I was the one who could best communicate with him. I spoke his language. As it stands right now, there’s no way to guarantee that patients like Pedro receive counseling about different care options (maybe he doesn’t want to go through another round of chemotherapy) or help explaining their end-of-life decisions to family members (maybe he doesn’t want to spend his final days in an ICU).

Under the new Medicare proposal, scheduled to go into effect this fall, any qualified team member—a doctor, a nurse, an assistant—can bill for the time it takes to discuss all the different procedures and interventions that a patient like Pedro might face. Had this been an option during Pedro’s hospitalization, somebody else caring for him might have caught my oversight and talked with me about it, or perhaps held a conversation with Pedro herself and billed for it. Medicare’s reimbursement scheme doesn’t just incentivize holding difficult discussions, it also assigns responsibility. It’s a way of establishing ownership over a difficult conversation.

The day after the Chicago meeting ended—the same day Medicare announced its new plan—I tried finding Pedro in the hospital. I wasn’t scheduled to work, but I thought I might make up for my lack of clear communication by telling him what the new findings really meant. Unfortunately, Pedro was gone. I saw in the chart that the spinal procedure had gone smoothly and that he had actually walked out of the hospital.

A month later, I saw his name outside one of the doors in the cancer unit. Since our last visit, he’d lost weight and endured awfulness, his femur snapping spontaneously as he attempted to walk one morning, so overrun was it by tumor, but somehow Pedro retained his smile and grace. I told him I’d thought so much about our conversations that I wrote an article about him, one I hoped would help doctors think about how they communicate bad news, and he gave me permission to use his name. Fortunately, another of the hospitalists had taken the time to hold the difficult conversation with him. Pedro and his family knew he would soon die, and were preparing for such.

Still, I couldn’t help but feel a professional shame, one I used to feel as a younger doctor when nurses called to remind me of some routine task I had forgotten about, one that made me occasionally punch myself in the thigh and say, “I really need to remember to do that next time.” For Pedro’s sake, I really do.

Complete Article HERE!

Maplewood death shows critical need for end-of-life directive

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made.


Gloria Scott, right, signs a “do not resuscitate” order while at the hospice wing of Margaret Tietz Nursing and Rehabilitation Center in the Queens borough of New York on Nov. 26, 2009. At left is her physician, Dr. Lauren Shaiova.

A life-or-death decision by Maplewood paramedics, who stopped life support for an elderly woman at her husband’s insistence, underscores why individuals should have legal documents spelling out the care they want in what can be frantic and confusing end-of-life emergencies, health officials said Wednesday.

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made Aug. 7, when medics initially revived 71-year-old Linda Sandhei and started wheeling her to an ambulance, only to have the woman’s husband tell them to stop, according to a police report of the incident. Sandhei died soon after.

Advance directives and do-not-resuscitate (DNR) orders can provide clear guidance for such high-stress decisions. But absent those documents, medics are often asked to trust relatives who are distraught and may not know the wishes of their dying loved ones, said Dr. Jeffrey Ho, medical director for Hennepin County Medical Center’s emergency management services (EMS).

“What we’re trying to avoid is some random person coming up to us and saying, ‘Stop, I don’t want Mabel resuscitated!’ And we ask, ‘Well, who are you?’ and he says, ‘Oh, I’m her son,’ ” Ho said. “We have no way of verifying if that’s true or not, and we really have no way of verifying whether Mabel would actually want to be resuscitated or not.”

Research has shown that patients’ wishes are followed more often when spelled out in advance directives, and that relatives suffer less stress and anxiety. But such documents remain uncommon, even after a coordinated campaign called Honoring Choices by Minnesota’s eight major health care systems to get more people to complete them. The state’s top system had completed directives from just 32 percent of its elderly outpatients, according to a study last year.

Sandhei, who had suffered from Parkinson’s disease for two decades, either hadn’t completed a directive or didn’t have one filed with the Good Samaritan nursing home in Maplewood. She was transferred there in July after being admitted to Regions Hospital, according to a police report.

Her son was at her bedside around 4 p.m. Aug. 7 when she vomited in her sleep and stopped breathing. Sandhei’s husband, Tom, arrived later and stopped the medics from loading his wife in an ambulance for transfer to a hospital. He declined to discuss the incident when reached by phone Wednesday.

Written directives aren’t always the final word in a high-stress situation when someone is dying and relatives are angry or scared. Paramedic Mike Trullinger has tried to follow DNR orders for dying patients only to be threatened by distraught relatives with lawsuits, a baseball bat and, in one rural case, a shotgun pointed at him.

“The patient had a DNR order, but the family member had a shotgun. So we performed CPR anyway,” said Trullinger, now a supervisor for HCMC’s EMS. A sheriff’s deputy eventually arrived and the man put down the weapon and became apologetic, Trullinger said. CPR failed.

Ho said his medics, too, have experienced tough situations even when patients had written documents. Sometimes the document might be improperly dated or lack a doctor’s signature, calling it into question. Other times relatives are scrambling to dig up the document from files while medics are proceeding with CPR.

Frequently, relatives who thought they were prepared to see a loved one die have a change of heart when the moment arrives.

Regardless, Ho said having that paperwork completed resolves more confusion than it creates and leaves people feeling confident in their end-of-life decisions.

“It’s a very difficult decision to be making in a split second with limited information,” he said. “It’s tough to be second-guessed afterward.”

Err on the side of life

The Maplewood Fire Department policy manual instructs medics to follow written orders but otherwise pursue resuscitation: “Until properly completed orders are presented, pre-hospital personnel will assume that no valid DNR orders exist and proceed with standing orders for resuscitation as medically indicated.”

A Hennepin County protocol governing HCMC, North Memorial, Allina, Ridgeview and Edina EMS agencies provides similar advice.

“If we are going to start a resuscitation, we need to do it right then and there,” Ho said. “If the information is not clear to us, then we are erring on the side of starting resuscitation, because we can always stop it later.”

Nursing home workers operate under similar assumptions, said Patti Cullen of Care Providers of Minnesota, a trade group for nursing homes. “From a legal perspective, we advise our members that without the presence of this DNR that is signed, that’s official, they’ve got to do every lifesaving measure, because families will sue if you don’t save a life. They won’t sue if you break ribs because you did CPR.”

The fact that the Maplewood medics halted life support in the absence of a written directive for Sandhei suggested to Ho and Cullen that they had enough information from the relatives or nursing home staff to override the bias toward continuing lifesaving efforts.

Maplewood police made no arrests in the case after an investigation concluded that the medics acted in “good faith.” The term is defined in the state’s advance-directive statute as acting in the best interests of a patient in any way short of assisted suicide.

Six Maplewood firefighters, including the chief, were suspended after a complaint was filed, but city officials declined to confirm whether the complaint was linked to Sandhei.

Cullen sympathized with the relatives and first responders, who she said appeared to act in the best interests of the family and patient.

“You know, the reason for doing that legal document,” she said, “is to get all of the family members on the same page.”

Complete Article HERE!

Zen and the Art of Dying Well

The Amateurs Guide Cover

Right-to-die advocate dies without reprieve: San Mateo resident Jennifer Glass fought for new legislation

By Samantha Weigel

Just months after urging the California Legislature to empower her to cease her suffering on her own terms as she battled an aggressive form of cancer, Jennifer Glass died in her San Mateo home Tuesday night.

Jennifer Glass died in her San Mateo home Tuesday night after battling stage 4 lung cancer. Glass had sought changes to state legislation so she could have controlled how she died.

Despite her condition, the 52-year-old was an active advocate for Senate Bill 128: End of Life Option Act and her supporters remain saddened the legislation, which could have allowed Glass to avoid more suffering, stagnated in the Assembly.

A former communications specialist who took charge of high-power campaigns such as for Facebook and Oracle, Glass turned her attention to the state’s right-to-die initiative after being diagnosed with stage 4 lung cancer in 2012, just four months after marrying her husband Harlan Seymour.

A national spokeswoman for the movement who worked closely with the advocacy group Compassion and Choices, Glass died while California lawmakers stalled on a right-to-die law. SB 128 would give patients who are terminally ill the right to terminate their own life after completing a series of checks and balances with doctors and mental health professionals.

Glass fought to extend her life through chemotherapy as well as radiation and even did better for a time; however, a CT scan taken in June of this year showed her cancer had spread to her lungs, liver, abdomen, pelvis and brain. Unable to tolerate chemo, she decided to die at home, Seymour said.

As her lungs filled with fluid making breathing difficult and her pain increased, Glass opted to undergo palliative sedation — a process in which she is medicated into a coma then nutrition and fluids are withheld until the patient dies from the disease or dehydration.

It took her more than five days to die, a disheartening time marked by her awaking from the coma in a panic one evening, Seymour said.

“By the time she started palliative sedation, she was in so much pain, she really couldn’t say goodbye to people. If there was an end-of-life option, she could have started earlier, even just one day, she could have said goodbye to her loved ones and had a quiet death,” Seymour said. “Palliative sedation is really just a slow motion version of what the end-of-life option offers. Instead of a seven-day, dragged-out death in a coma, it’s a death that could just last a few hours and allows for a better ending with one’s family. … It would have been a great comfort to her if she had the choice to end her life in a faster manner. She would have suffered less.”

Had SB 128 been enacted, Glass would have been able to obtain aid in dying through prescription medication that she could have taken at home allowing her to die in her sleep, sometimes in as little as 30 minutes — as in the case of Brittany Maynard, a 29-year-old Bay Area resident who moved to Oregon to exercise her right to die, according to a press release from Compassion and Choices.


Opponents say SB 128 could have unintended consequences as insurance companies looking to cut costs or those without good access to health care may be more inclined to use these types of laws.

“The concerns of our coalition, there are many but primarily, is that you cannot base broad public policy decisions on one case, you have to look at all of California and not just a single individual or a narrow group of individuals,” said Tim Rosales, spokesman with the Californians Against Assisted Suicide. “Consider how these policies would impact everyone in a state as diverse as California; particularly in parts of California where people do not have access to the types of health care where they can get second and third opinions or access to better treatment.”

Rosales noted many states across the country turned down legislation dealing with the issue this year and instead, California should focus on making hospice and palliative sedation more accessible.

Another option

While opponents often cite palliative sedation as a suitable alternative, representatives from Compassion and Choices argue Glass’ case proves it didn’t allow her to die peacefully.

“With Jennifer, it obviously did not work as effectively. … It’s really important for people to understand that in reality, palliative sedation does not work for everyone and those folks need another option. Medical aid in dying is that option,” said Toni Broaddus, campaign director for Compassion and Choices California. “In that sense, this legislation is really somewhat neutral because it doesn’t tell anyone what they have to do at the end of their life, but it says you can have all the medically possible options out there at the end of life. Public policy, and this is good public policy, I think is for the state not to be telling people they can’t have access to a service or prescription that many other states are using.”

Glass’ family agreed adding palliative sedation is not as dignified and can be much more painful for both the patient and their loved ones. Glass’ sister Mavis Prall noted it was not the quick nor peaceful option she was fighting for.

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down,” Prall said in the press release. “Members of the California Legislature should be aware that their inaction has painful consequences. I urge them to pass the End of Life Option Act this year.”

Glass publicly spoke in support of SB 128, co-authored by state Sen. Bill Monning, D-Carmel, as she fought to provide those who are suffering with a choice.

‘Keep fighting’

Glass had been scheduled to testify in the Assembly’s Committee on Health July 7 but the hearing was canceled and has yet to be rescheduled. Broaddus acknowledged while SB 128 easily passed the Senate, there weren’t enough votes in the Assembly. Yet as Glass requested, they will continue to advocate for the bill to be adopted this year, Broaddus said.

“Her message to us had been ‘keep fighting, don’t stop fighting,’” Broaddus said. “This issue is very very personal for people. Despite what it may appear, it does not break down party lines or ideological lines. It’s something people look at very personally based on their own experience.”

Sen. Monning expressed his condolences while noting SB 128 is still in action.

“My heart goes out to her family. We will continue to pursue Jennifer’s commitment to establish the right of terminally ill patients to have all end-of-life options made available to them,” Monning wrote in a press release.


Seymour said he would continue to support the right-to-die movement that could have spared his wife from further suffering and prefers she be remembered as a strong, loving and logical woman.

“Jennifer was very worried about suffering greatly in the process of her death, and she was concerned about what it would do to her loved ones. She didn’t want to die drowning in her own lung fluid and that’s essentially how she died,” Seymour said. “If you allow palliative sedation, there’s no reason not to allow a faster, less traumatic, less painful way of going as well. … I really want to see Jennifer’s legacy and her dream of having an end-of-life option come true.”
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Drugs to prevent ‘death rattle’ of dying patients not justifiable if intention is only to reduce distress of relatives, says new guidelines

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The National Institute of Health and Care Excellence (NICE) says there is little evidence that the drugs used are effective


Drugs used to prevent the so-called “death rattle” of dying patients can have unpleasant side effects and may not be “morally and economically” justifiable if used only to reduce the distress of relatives, according to new guidelines.

The death rattle is a common symptom in the final days and hours before death. It is one of most well-known indicators that death is near and can be extremely upsetting for relatives at the bedside.

It occurs when secretions such as saliva collect at the back of the throat – often after a person has lost their ability to swallow – creating a hollow, gurgling sound.

Clinicians often use drugs called anti-muscarinic agents to ‘dry up’ the secretions, in order to reduce the symptoms.

However, according to new draft guidance on the care of the dying from the National Institute of Health and Care Excellence (NICE), there is little evidence that the drugs are effective, and they can also cause side effects including dryness in the mouth, blurred vision and retention of urine.

The guidance says that repositioning the patient or using suction tubes can be just as effective at reducing the symptoms.

“It is common to experience noisy respiratory secretions at the end of life…and the death rattle is a strong predictor of death,” the draft guidance says. “The noise can cause considerable distress, both at the time and possibly after death, due to concerns that the person may have drowned or suffocated to death.

“For many years it has been the practice of clinicians to administer subcutaneous anti-muscarinic agents in an attempt to ‘dry up’ secretions and relieve any distress primarily to carers and relatives despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.”

It goes on to say that, along with the side effects, the cost of using drugs makes it “hard both morally and economically to justify their continued use when the current evidence does not support them and treatment is usually aimed at minimising distress of people other than the dying person.”

The new guidance also includes recommendations on fluid intake for dying people, decision-making around medication and communication with patients and relatives.

Their publication follows the abolition last year of the controversial Liverpool Care Pathway (LCP), which was withdrawn after a review found serious failings in the way it was being implemented, including concerns that decisions around end of life care were not always being made by experienced clinicians.

NICE also said the LCP had suffered from a “perception that hydration and some essential medications may have been withheld or withdrawn, with negative impact on the dying process.”

The new guidelines, which will now go out for consultation, state that people in the last days of life should be encouraged to drink if they are able and wish to.

Sir Andrew Dillon, chief executive of NICE said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.

“Earlier this year the Parliamentary and Health Service Ombudsman said that end of life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”

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