A Good Life And A Good Death…

What Is Palliative Care?


Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.

By

“He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.

In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.

We spoke with Puri about the field of palliative care and what patients need to know.

This interview has been edited for clarity and length.

What is palliative care, and how is it different from hospice?

Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.

In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.

How common is it now to have palliative care specialists available?

There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.

We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.

What other advantages does palliative care offer?

I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.

One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.

You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?

I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.

And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.

When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?

When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.

What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.

You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.

What are the consequences for doctors and for the patient’s treatment of using this kind of language?

I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.

From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.

I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.

What kind of therapies might be harmful or not be in their best interest?

Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.

And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.

So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?

The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.

When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.

Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?

I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.

For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?

In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.

I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.

Complete Article HERE!

Health care fellows learn the tough task of discussing death and dying

Foundation’s fellowship program aims to expand number of health professionals skilled at discussing end-of-life issues with patients

By Gary Rotstein

Each Monday night for eight weeks, the group of aspiring physicians, pharmacists, social workers, medical ethicists and other future health care professionals met for three hours to talk about death — for the purpose of being better able to talk about death.

The 33 post-graduate students and other trainees spent time at a residential hospice, hospital and nursing home. They heard from palliative care doctors, geriatricians and other specialists. They talked with relatives of those who had died. They practiced end-of-life conversations with one another.

And by their last meeting this month, the participants in the Death & Dying Fellowship of the Jewish Healthcare Foundation learned how to broach a difficult topic with terminally ill patients and those individuals’ loved ones — a topic for which their formal studies typically provided minimal preparation.

“When you’re in front of a family crying their eyes out, it’s a whole different game,” said participant Tamara Means, a former medical resident who admitted that her past nervousness addressing such issues probably only made things worse for some seriously ill patients.

She and others learned during two months how, among other things, to listen better to patients and families; to look for cues that they’re ready to face up to mortality; to bring up death-related discussion in a non-judgmental way that respects different cultural values; to be able to consider emotions in addition to medical skills and technology.

The fellowship is one of a variety of Jewish Healthcare Foundation programs intended to promote a better end-of-life experience, including more personal planning and decision-making by those affected. The foundation’s officials believe the medical profession needs to do more to help patients address the potential failure of curative treatment, with too little taught about end-of-life conversations in medical school.

If existing practitioners won’t take the lead in helping seriously ill people prepare for their final stage of life, the foundation is counting on the field’s newcomers to do so. Since launching the annual Death & Dying Fellowship for that purpose five years ago, the program has drawn far more interest than officials anticipated, with all of its available slots filled again this year.

“You’re our apostles — 30 to 35 people who will go out and help hundreds of others learn how to talk about death and end-of-life,” foundation president Karen Wolk Feinstein told them April 1.

“There’s a lot more that can and should be done” in the way of core training in school, Michael Barkowski, a second-year medical resident at Allegheny General Hospital, agreed afterward while citing the confidence he gained from the fellowship program. “No matter what field we go into, we’re all going to work with patients who have chronic diseases and end-of-life illnesses.”

Some 2.7 million Americans die each year, and most die under medical supervision in a hospital or nursing home rather than in their own residence. Those who die at home have frequently been hospitalized late in life themselves.

So most individuals have interacted with medical professionals before death, but the fellowship program’s instructors say both sides often ignore end-of-life discussion, such as how much intensive treatment a patient would want if there’s minimal chance of benefit.

It’s easier to just avoid a topic that makes everyone uneasy, Robert Arnold, medical director of the UPMC Palliative and Supportive Institute, told the fellows at their final session. He noted that patients are fearful about the end of their lives and doctors lack incentives to discuss it.

“We collude not to talk about it,” he said, although palliative care specialists such as he have more time and training for that purpose.

“There’s nothing natural about this,” Dr. Arnold said while coaching his young listeners to make end-of-life care part of their professional “identity.”

They should be good listeners as to the expectations of patients and families, he said, and then offer themselves as guides to the decision-making that eventually will be required. Their knowledge, if shared properly, can assist patients in weighing the merits of more procedures versus more comfort.

Alexandria Abdalla, who is pursuing a master’s degree in bioethics from the University of Pittsburgh, said she always has had a fascination with death but knew little before the program about how to discuss it professionally. She said she has learned how to “read between the lines” of what patients are saying and acknowledge their emotions.

She put that to use recently when shadowing a geriatric oncology doctor at one of UPMC’s hospitals. Ms. Abdalla was left alone with an elderly woman temporarily after the doctor left her room. The patient mentioned her fears about her prognosis, and instead of trying to talk her out of it, Ms. Abdalla simply listened.

“Then I told her, ‘I’m sorry what you’re going through is so difficult — I wish we weren’t in this position,’” Ms. Abdalla said. “She seemed to appreciate just having someone to listen.”

Dr. Barkowski, the 29-year-old AGH resident who plans to specialize in palliative care, said he now better understands how to build relationships with patients prior to such a serious conversation. In a recent visit with a family in the hospital’s intensive care unit, he sought no quick responses when laying out the options for an elderly woman with advanced breast cancer.

“I went into it without any agenda like previously, when I might have wanted a decision within one meeting,” he said. “We talked every day for the next few days. … We were journeying together, like Dr. Arnold was saying — you’re an educated guide helping them understand the medical things happening, how severe things are, what the limits are of what we can do, learning about the patient’s values and aligning treatment with those.”

Ultimately, a decision was made to discontinue treatment — the patient had reached the point of requiring kidney dialysis on top of other issues — but it was in a manner that her family understood, accepting it as the right decision for the patient, who died within days.

“It’s all about building trust,” Dr. Barkowski said. “The listening is where everything starts, and the fellowship was able to build on that.”

The Jewish Healthcare Foundation expects to sponsor the fellowship again in early 2020 for individuals pursuing health care-related careers who are in graduate school or medical training. Application information will be made available later this year on the foundation’s website.

Complete Article HERE!

A Good Life And A Good Death

What Is Palliative Care?

Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.

By

“He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.

In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.

We spoke with Puri about the field of palliative care and what patients need to know.

This interview has been edited for clarity and length.

What is palliative care, and how is it different from hospice?

Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.

In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.

How common is it now to have palliative care specialists available?

There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.

We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.

What other advantages does palliative care offer?

I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.

One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.

You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?

I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.

And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.

When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?

When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.

What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.

You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.

What are the consequences for doctors and for the patient’s treatment of using this kind of language?

I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.

From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.

I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.

What kind of therapies might be harmful or not be in their best interest?

Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.

And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.

So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?

The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.

When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.

Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?

I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.

For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?

In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.

I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.

Complete Article HERE!

How to Make Doctors Think About Death

End-of-life treatment guidelines would help families, physicians and nurses confront the inevitable with care and compassion.

By Theresa Brown

My patient, an octogenarian with pneumonia and acute leukemia, was too frail to tolerate the standard treatment for his cancer, and trying to cure his pneumonia with intravenous antibiotics, when the leukemia had already compromised his immune system, would only have weakened him further. It made sense to switch him to “comfort measures”: to focus on alleviating his suffering rather than curing him.

It would also make sense to have general treatment guidelines for situations like this, guidelines to indicate when comfort, not cure, is most appropriate. But no such guidelines exist.

Which is why the patient’s family physician could come to the hospital, imagining himself as the cavalry, and switch the patient back to active treatment, including full resuscitation if he had a cardiac arrest. The patient was so sick that active treatment necessitated intensive care.

I took him to the intensive care unit myself. When I got there, I got into an argument with the receiving nurse about the patient’s status.

Looking to defuse the situation, the nurse apologized. “I hate these cases where there’s no point to what we’re doing,” he said.

No point. The patient’s stay in intensive care was the clinical equivalent of bailing out a sinking boat. He might gain a little time, but not much.

Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.

These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.

Such guidelines exist for a host of conditions: cardiac arrest, diabetes, depression. Though they can be controversial — viewed as too restrictive in some cases, in other instances too loose — they set a bar for an appropriate course of care.

‘He Nodded, Apparently Took the Sign Literally and Rushed Up the Steps’

A simple treatment guideline for clinical situations like my octogenarian patient’s might look like this: For patients who have one terminal illness that is either resistant to treatment or can’t be safely treated, combined with a second very serious illness or complication, along with a high degree of physiological frailty, physicians should consider comfort measures instead of cure.

To me, a hospice nurse, this guideline reads like common sense. But doctors who look at patients primarily as collections of individual problems, rather than very sick individuals, can miss the obvious.

Another patient I cared for in the hospital had received a liver transplant, was H.I.V. positive, and had been newly diagnosed with lymphoma. One of his sisters recited his physician’s hope-filled words back to me: “His body isn’t rejecting the liver, his H.I.V. is under control and his lymphoma can be treated.” His mental state had deteriorated to the point that he routinely tried to eat his own feces, but that symptom wasn’t considered relevant.

Health care has many financial incentives that encourage continued treatment, no matter how pointless. Liability issues arise too: Some physicians worry about being sued if they stop aggressive care for dying patients.

But my experience in hospice suggests that the fundamental issue is more basic: lack of time. According to the family of one patient I cared for — 94 years old, septic, minimally conscious, with an intestinal obstruction and a new diagnosis of cancer — no one told them how very ill she was. I would guess the staff didn’t have time, or wasn’t able to make time.

These kinds of discussions take a while because the family’s understanding of the patient’s illness must be sussed out, and their fears, worries and angers must be aired and addressed. “Comfort care” has to be explained in the context of a failing human body. That difficult, time-consuming emotional work can be avoided by simply sending patients to I.C.U. or to another hospital.

Some physicians also believe that they should have the final say about their patients’ care, especially when a patient’s health is failing. Each case is unique, and a physician’s input is invaluable. But doctors are also generally acknowledged to be unrealistically positive prognosticators. The hard truth is that every single one of us will one day reach a point where our irreparable vulnerability, and decline, cannot be denied or reversed.

As technology advances, will it continue to blur the lines between public and private? Explore what’s at stake and what you can do about it.

It helps to look at this question through the lens of medical ethics. In general, the many treatment possibilities available via modern health care are viewed as actively good, or as medical ethicists would say, beneficent. Honoring patients’ autonomy at the end of their lives is also seen as beneficent. In clinical practice, when these competing goods conflict, the treatment decisions that get made tend to be, as I have described, random and disordered.

The guidelines I propose for comfort care introduce a third term into the discussion: maleficence. Pursuing curative care that is pointless creates harm for patients and staff, who, like the frustrated I.C.U. nurse taking over my octogenarian patient, experience moral distress in these situations and a feeling of professional uselessness.

Such guidelines would introduce clarity into end-of-life decisions while still respecting patients’ autonomy. An end-of-life guideline might automatically call a palliative care clinician to the bedside to help patients and family members understand the choices available to them. The guidelines would empower nurses to advocate for comfort care, irrespective of physicians who view aggressive treatment as always being in the patient’s best interest.

For patients who choose full resuscitation and treatment despite being very ill and fragile, a guideline would ensure that they learned about comfort care. But they would never overrule a patient’s wishes for curative treatment.

The day after my octogenarian patient’s transfer to the I.C.U. he returned to our floor, back on comfort measures. I was told that the patient’s oncologist took his family physician aside and, in a scene worthy of a medical TV show, yelled at him.

The family doctor had skipped over the leukemia diagnosis, had reacted to his patient being essentially put on hospice for pneumonia, and either out of sympathy or hubris, had rushed over to the hospital to save him. But he couldn’t be saved, and we all knew that. He died a few days later.

Our society makes admissions of medical futility in the face of human frailty harder by equating “cure” with “fighting back” and “comfort” with “giving up.” A set of guidelines won’t change that. But it would help nurses and doctors acknowledge when cure is impossible, and comfort is the most compassionate, ethical route.

Complete Article HERE!

A Good Death Is Not a Failure, But a Gift

By Linda R. Duska, MD, MPH

I am a gynecologic oncologist and I’m boarded in palliative care. As a result of my training and 20+ years of clinical experience, I feel strongly about caring for the whole patient throughout the clinical course: spiritually, emotionally, and physically. In those 20+ years, I have experienced the end of life with many patients and families. Although everyone handles it differently, I’ve observed some common themes. It is difficult to stop treatment, to accept the inevitable with dignity, to die “well”—not just for the patient and her family, but for her providers as well.

This past Christmas, I experienced the death of a loved one both as a family member and a health care provider, acting in the stead of the health care providers who were absent at the end of life. The experience of my father in law’s passing brought home to me that inappropriate aggressive measures at the end of life are not limited to patients with cancer, but affect us all.

I met my husband when we were freshmen in college, and we spent a lot of time at his father’s home together. My husband has a big Catholic family who are all rabid Eagles fans; I am a Jewish liberal girl raised on the Boston teams. They accepted me unconditionally. I shared Sunday dinner with his family, brought my laundry over, watched movies on his dad’s TV. When my husband and I were married in a Jewish ceremony in Boston, everyone in his family came to the wedding and thoroughly enjoyed the ceremony and dancing the hora at the reception.

My husband’s family, and particularly his father, were an important part of both of our lives. My father-in-law, Ron, was a philosophy professor and a brilliant man who loved to argue (he would say debate) with his children. While he and I disagreed about many things, I never felt judged by him, or by anyone else in the family.

In the last few years, I could tell that Ron was sick, but he was private about the details and I didn’t pry. I did know that he had multiple stents placed in his cardiac vessels. This past year, though, there had been a significant deterioration in his condition. He had to stop golfing due to fatigue, and he was in and out of the hospital with shortness of breath and chest pain.

In December, I visited the community hospital where Ron was receiving care; his third prolonged admission in as many weeks. I found him sitting in a chair wrapped in a heavy blanket in an overheated room. He had lost a lot of weight and looked frail. He had to lean forward to breathe. A few weeks before my visit, he had undergone another cardiac catheterization (there was nothing more to stent) and a renal artery catheterization that showed bilateral significant occlusion.

Ron told me he expected to get better and get back to the golf course. I told him I wished for him to get well enough to go home and stay out of the hospital.

I had spoken to his wife on the telephone before the renal artery catheterization. I talked with her about requesting a palliative care consult as Ron was clearly suffering. We discussed the hard questions I was hoping would be addressed. I don’t know if she asked these questions. I do know that the doctors convinced her that the renal artery catheterization might help him. I know that they didn’t offer a palliative care consultation and I know that they didn’t tell my in-laws that Ron would not get better—that his current state was the best they could hope for.

On Christmas morning, my husband and I received a panicked call from Ron’s wife. When we arrived, he was clearly in distress. An episode of melena (that apparently wasn’t new) needed to be managed urgently. I spoke to his primary physician on the phone, who suggested we bring him to the ED. I asked him if the ED was the best decision; wouldn’t hospice be a better option? Yes, he said, it would. In fact, he said he had been thinking about this for the past two months. This revelation shocked me. Why, I asked him, had he not said anything to the family? Why was he continuing to recommend and pursue aggressive care in this 81-year-old man who was clearly declining? There was no good answer to this question.

And so it fell to me to tell Ron’s wife that he wasn’t going to get better, and that she had to make a choice: take him to the ED, where he was likely to be admitted to the hospital for another prolonged—and futile—stay, or keep him at home and call hospice. I will admit that I supported avoiding the hospital, and for better or worse, I influenced that decision.

I talked to Ron that morning during the intermittent periods that he was awake. He asked me how I knew he was dying. (A good question, but I just knew, an instinct honed over two decades of caring for patients with cancer.) He seemed genuinely surprised to hear that his condition would not improve. He told me he wasn’t ready to die, he had a lot of things left to do. (I asked him to make a list, but he couldn’t stay awake long enough to accomplish this task.) He said he was afraid. He had only that one morning to process impending death, and he never really got to say all of his goodbyes.

Ron died early that afternoon. I was with him. His death was peaceful. He was in his own home, surrounded by his (completely oblivious) grandchildren. It was what we call in medicine a “good death.”

But his family was angry. They weren’t prepared, they hadn’t known, they didn’t realize it would happen so fast. For the most part, they had all believed that he would get better. More than half of them didn’t make it to the house to say goodbye before he died.

I was angry, too. I was furious at Ron’s care providers that day. They never communicated clearly with him or his wife that he was dying, that his chances of getting better were slim. They didn’t discuss quality of life or goals of care. They offered aggressive procedures that were potentially life shortening and unlikely to be helpful, and the family didn’t feel empowered to decline. Their approach was the opposite of everything I believe in as a palliative specialist, an oncologist, a fellow human being.

Unfortunately, this type of aggressive care at the end of life happens often. We live in “a very peculiar, death denying society.”1 As providers, we spend far too much money on procedures at the end of life (chemotherapy, ICU, catheterizations) that are unlikely to benefit our patients, and in fact are likely to decrease quality of life and hasten death.

Why do we do this? Are we afraid to tell patients the truth? Are we reluctant to admit to ourselves that sometimes medicine has nothing more to offer and that death is unavoidable (for all of us)? Maybe it feels too much like failing to say that there’s nothing more we can do, even when there are other options (such as palliative care and/or hospice) that are far preferable to aggressive medical procedures and prolonged hospital stays.

A few weeks after Ron died, his wife called me. She wanted to talk about the decision we made to keep him home. She wanted to know if this was the right choice: if she had taken him to the hospital that day, would things have been different?

I told her honestly that yes, things would have been different—they would have been horribly worse. Ron would not have lived longer, and he certainly wouldn’t have died at home, in his bedroom, in his recliner, surrounded by his family. We could have painfully prolonged the dying process, by a few hours or a few days at most, but we could not have stopped it. She had made the right decision.

Here is the fact that we cannot avoid: We are all going to die. Whether we cheer for the Eagles or the Patriots, whether we are philosophy professors or medical professionals (yes, even us). I believe it is fair to say that most of us want to die that “good death,” surrounded by our family and friends, not attached to machines in a sterile hospital environment.

As providers, we must take that extra step to be honest with our patients and prepare them for the truth. To do less—to gloss over the inevitable end of life and deny them the opportunity for a good death—is to do our patients a profound disservice. For myself and for my family, I hope that our own health care providers will be honest with us about what medicine can and cannot accomplish in improving all aspects of health.

My pain at losing Ron is mitigated in a small way by knowing that I helped to spare him from discomfort and loss of dignity in the final hours of his life. I am so glad that, as a palliative care provider and cancer physician, I had the training and experience to do this small thing for the man who welcomed me so wholeheartedly into his family.

Complete Article HERE!

‘People have been frightened for me to tell their loved one they’re dying, in case they die quicker’

An intensive care doctor has written an honest book about her experiences.

NONE OF US want to end up in intensive care. But if we do, we should hope we end up with a doctor like Aoife Abbey.

The UK-based Irish doctor has written a book about what it is like being an intensive care doctor, exploring the emotional moments she has experienced. It’s a book that might just change how you think about death – and how you talk to your family about it.

After reading the book, Seven Signs of Life, you’ll want to sit down with your nearest and dearest to discuss what might happen to you should end up needing intensive care. Talking about death or serious illness is a taboo that still persists, but Dublin-born Abbey – who is in her mid-thirties – wants us to confront it.

“I appreciate people need to talk about death more because what I often say is, people come into intensive care, they don’t know they’re going to be there – it’s a surprise to everybody, they’ve had an accident or something,” she explains. “And you say to their family ‘what do you think they would have wanted?’ And the answer is ‘God, I don’t know. We haven’t talked about it.’ Why would you?”

This avoidance can lead to big questions being unanswered. “How would the patient feel about risking being alive and not being able to talk, how would they feel about organ donation? There’s lots of things people don’t discuss, and I think we need to discuss them more,” says Abbey, who graduated from the University of Warwick in 2011.

She advises people to have those difficult conversations with loved ones. “But what I would say is that it can often be difficult to imagine yourself in situations, so people might say ‘oh I would hate to have dementia. I’d rather just drop off.’,” she cautions. “When actually they don’t know that it’s true, because they’re not in that situation. So I think we have to be careful when we have conversations about life and death and what you’d like, in that we’re having general conversations and that we’re still not trying to pigeonhole people into certain decisions.”

Because often people will say ‘I would hate to live this way’ but actually then find an amount of joy and contentment living that way in the end because they have no other option. It is a difficult conversation.

“I guess in Ireland there’s always that thing of people say ‘don’t tempt fate’,” she says. Abbey and her family have had to deal with serious illness themselves. Her brother, Aaron, was a disability rights campaigner and died in October 2018. He was in and out of hospital a lot while the siblings were growing up.

“I’ve certainly had encounters where people have been frightened for me to tell their loved one that they are dying. And not just because they were worried that it would upset them emotionally, which is a very valid worry and I would worry the same thing,” says Abbey.

Because they would feel like that would mean they would die quicker. That crops up quite a lot, people say don’t tell them, because they’ll just give up.

‘It’s routine… until it isn’t’

The book was inspired by anonymous columns Abbey wrote for the British Medical Association, and the stories of the patients in the book are anonymised and amalgamated.

“I always loved intensive care and I loved it because there’s a lot of science there, you get to be specific, you get to care about the numbers,” says Abbey. “You have a lot of facilities, you know the nursing to patient ratio is one to one or one to two, you have all the numbers in front of you, everything is quite scientific.”

At the same time, this is juxtaposed against “the massive uncertainty of not knowing what somebody’s outcome is going to be”.

The level of pressure and responsibility builds the longer you work in intensive care.

There’s always an opportunity to ask for help. You learn as you go along and that’s how we do it, so it was never the case where I had to walk into an ICU and make loads of decisions.

She says that like everything in medicine, “all of this stuff is routine until it isn’t”. Indeed, in the book she details times when things did not go to plan. “If you intubate 100 patients and 99 of them are perfect, easy … it’s the one that’s difficult that’s the issue. So most things are routine, there’s always the potential for it not to be.”

When it comes to errors, the onus is on the doctor to make sure they learn from it.

“There’s nothing that makes you learn more than making a mistake,” she says. “You’re unlikely to ever do it again.”

The main thing is there is a culture, and it’s the right culture, where we don’t blame people when they make mistakes. And we’re supposed to recognise it’s a systems failure, and there’s lots of different explanations for why things go wrong, and it’s rarely one person’s issue; one person’s fault. But at the same time you have to figure out ways as a doctor to still accept and be OK with the fact also that you did make a mistake.

She includes in the book an incident where she missed something on a chest x-ray. It must have been nerve-wracking to write about when she first included it in a Secret Doctor blog post.

“It is still in numbers their most read blog. So it’s … I’m not going to say vindicated but there’s a need for that kind of discussion and people clearly had an interest or it struck a chord with them.”

She has never worked with the HSE, and describes the NHS as something that’s very much woven into national identity in the UK. “You have this service that’s free at the point of care, and people are very proud of it. It’s a very emotive topic,” she says, noting that “it doesn’t matter how angry the media is with the NHS at a given point, patients that I see behave the same. Most of them they are grateful, they’re frightened, they’re scared – they are just people, they are separate from political issues.”

Speaking of political issues, the big one for NHS workers and Irish emigrants like Abbey is Brexit. “If I wasn’t from Ireland I would have a huge amount of uncertainty and I’d be very worried,” she says. “You don’t really know what’s going on. You take so much for granted.”

But it’s not something that she lets take over her work. “I think you just learn to be very focused on what you’re doing. You have to let things in in the moment or else you’re not human, and you can’t engage with someone who’s being very emotional with you with a wall in front of you, because it’s not human and it’s not very nice for them either.”

She has learned to talk to her colleagues and friends about things that affect her, and not keep it bottled up. This is her eighth year in training, and in August 2020 she’ll be able to pursue a consultant job.

In the book she details very tender and emotional moments, such as when a dying man asks her to lift his head up so he can talk to her properly. It’s those intimate moments that leave an impact on her.

“There’s things you get exposed to but I guess in the moment it’s so much about what that person is feeling, you do feel a little bit humbled by the fact that you’re able to give them anything,” she says.

Because they’re going through something that is horrible. And you put it aside until you get home, or until you close the door of the room.

Seven Signs of Life is out now, published by Penguin Random House.

Complete Article HERE!