Palliative Care Quotes

But grounding and gratitude were palliative care versus curative care. I was still treating the symptoms without treating the source, and I would never truly be healed unless I confronted it.

People struggle to see it's not about whether she's going to die - palliative care isn't just a place you go to slowly slip away. More people live and leave than die on our wards. It is about being comfortable for the duration of something necessary and painful. Making bad times easier.

In the latter months of his own long sickness the Master Herbal had taught him much of the healer's lore, and the first lesson and the last of all that lore was this: Heal the wound and cure the illness, but let the dying spirit go.

A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.

A paradigm shift of viewing palliative care or hospice as a gift instead of seeing it as giving up has the potential to change the way we experience advanced age.

Time after time it was the “nice” people, the ones who compulsively put other’s expectations and needs ahead of their own and who repressed their so-called negative emotions, who showed up with chronic illness in my family practice, or who came under my care at the hospital palliative ward I directed.

Anger is an assertion of rights and worth. It is communication, equality, and knowledge. It is intimacy, acceptance, fearlessness, embodiment, revolt, and reconciliation. Anger is memory and rage. It is rational thought and irrational pain. Anger is freedom, independence, expansiveness, and entitlement. It is justice, passion, clarity, and motivation. Anger is instrumental, thoughtful, complicated, and resolved. In anger, whether you like it or not, there is truth. Anger is the demand of accountability, It is evaluation, judgment, and refutation. It is reflective, visionary, and participatory. It's a speech act, a social statement, an intention, and a purpose. It's a risk and a threat. A confirmation and a wish. It is both powerlessness and power, palliative and a provocation. In anger, you will find both ferocity and comfort, vulnerability and hurt. Anger is the expression of hope. How much anger is too much? Certainly not the anger that, for many of us, is a remembering of a self we learned to hide and quiet. It is willful and disobedient. It is survival, liberation, creativity, urgency, and vibrancy. It is a statement of need. An insistence of acknowledgment. Anger is a boundary. Anger is boundless. An opportunity for contemplation and self-awareness. It is commitment. Empathy. Self-love. Social responsibility. If it is poison, it is also the antidote. The anger we have as women is an act of radical imagination. Angry women burn brighter than the sun. In the coming years, we will hear, again, that anger is a destructive force, to be controlled. Watch carefully, because not everyone is asked to do this in equal measure. Women, especially, will be told to set our anger aside in favor of a kinder, gentler approach to change. This is a false juxtaposition. Reenvisioned, anger can be the most feminine of virtues: compassionate, fierce, wise, and powerful. The women I admire most—those who have looked to themselves and the limitations and adversities that come with our bodies and the expectations that come with them—have all found ways to transform their anger into meaningful change. In them, anger has moved from debilitation to liberation. Your anger is a gift you give to yourself and the world that is yours. In anger, I have lived more fully, freely, intensely, sensitively, and politically. If ever there was a time not to silence yourself, to channel your anger into healthy places and choices, this is it.

I wish that, at the end of life, when things were truly "done," there was something to look forward to. Something more pleasure-oriented. Perhaps opium, or heroin. So you become addicted. So what? All-you-can-eat ice cream parlors for the extremely aged. Big art pictures books and music. EXTREME palliative care, for when you've had it with everything else: the x-rays, the MRIs, the boring food, and the pills that don't do anything at all. Would that be so bad?

Rather than thinking about exceptional moral rules for exceptional moral situations,” Harvard’s Dr. Lachlan Forrow, who is also a palliative care specialist, wrote, “we should almost always see exceptional moral situations as opportunities for us to show exceptionally deep commitment to our deepest moral values.

The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

If your organization is not formally committed to a policy of nondiscrimination based on sexual orientation, gender identity, and gender expression or gender presentation in its employment practices, you should not expect lesbian, gay, bisexual, transgender, gender-nonconforming, queer, and/or questioning patients and families to feel safe seeking out your services.

The palliative care nurses welcome him: he's a spot of brightness, they claim he keeps the patients interested in life. "We don't think of the clients here as dying," one of them said to him on his first visit. "After all everyone's dying, just some of us more slowly.

They also received much less aggressive care at the end of their lives, with fewer rounds of chemotherapy and longer hospice stays. But the researchers were surprised to find something else. The palliative care group survived for an average of 11.6 months, compared to 8.9 months for the control group.30

Blue Springs Memorial Hospital Palliative Care Unit, Independence, Mo.

Palliative care isn’t only for the dying: any patient with serious symptoms or communication needs can benefit. But for patients approaching the end of life, its offerings are often critical.

The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer.

Sexual health is as achievable and reasonable a goal for patients in palliative care and hospice care as pain relief, but few hospice and palliative care professionals include sexual health within their assessment and plan of care. Given that sexuality is a central aspect of being human, sexual health should be part of the assessment and plan for every patient receiving palliative care and hospice care.

some accuse hospice and palliative care clinicians of promoting a “culture of death” when we allow dying people to leave this life gently, without subjecting them to CPR or mechanical ventilation or dialysis or medical nutrition.

Bronnie Ware, an Australian nurse and author who spent several years working in palliative care with patients in the last weeks of their lives, recorded her patients’ top five regrets. The number one regret was that people wished they had stayed true to themselves.

Palliative care’ they called it. Most people took it to mean alleviating, managing and softening the pain of those on a one-way road. Kennedy, the great lover of the dictionary… knew the further layer, the older, obsolete meaning of ‘palliate’: to cloak, to disguise.

False hope drives us to push on in the face of dismal odds. It means that we set aside one of the most important tools in medicine, palliative care, until, I would argue, the window for effective palliative measures has mostly closed and it is too late to undo extraordinary suffering.

Tiffy: So … in your professional opinion … Me: As a palliative care nurse? Tiffy: As a vaguely medical person … Oh, no. These conversations never go well. People always assume they teach us all the medicine in the world at nursing school, and that we remember it five years later.

Nita, stop...Stop justifying me. Henry didn't make me who I am. My mother didn't make me who I am. I made me who I am. i can see the justifications going through your brain. If Henry hadn't praised me, I wouldn't have done awful things. If Henry hadn't brought me people and enabled me, if henry hadn't taken away consequence for crime...if if if. If everything were different, who would I be? But the plain fact is, no matter how many ifs had changed, I'd still be me. Maybe not this me, here with you. But I'd always be a zannie, Nita. I like what I am. I like hurting people. I know so many people...make excuses for everything I do. They blame it on a tragic past. On what I am. As though who you are is defined by what you are. You once told me I could get my food from hospital emergency rooms. Or maybe palliative care wards. You're right, I could. And it's a choice not to...I am not a good person. But I am a person. I make my own choices. - Kovit

cellular activity in your tumor . . . well, prognosis can range from six months to . . . um, it’s difficult to say. Although certainly there have been some successful cases . . .” “Okay then,” I said, grabbing my bag off the back of the chair. “I’ll be in touch.” “Elizabeth! I’d really like you to meet with a counselor—” I left before he had a chance to finish, the taste of cold pennies on my tongue, as though I’d consented to chemo and already started injecting liquid poison into my bloodstream. Oncologists, nurses, radiologists, palliative care specialists: I was all too familiar with the cancer routine, and I wasn’t interested. Not one bit. My twin brother, Paul, once told me that there’s healthy denial,

You will regret the fear. In The Top Five Regrets of the Dying, Bronnie Ware—a nurse who worked in palliative care—shared her experience of talking to those near the end of their lives. Far and away the biggest regret they had was fear. Many of Bronnie’s patients were in deep anguish that they had spent their whole lives worrying. Lives consumed by fear. Worrying what other people thought of them. A worry that had stopped them being true to themselves.

If the changes that we fear be thus irresistible, what remains but to acquiesce with silence, as in the other insurmountable distresses of humanity? It remains that we retard what we cannot repel, that we palliate what we cannot cure. Life may be lengthened by care, though death cannot be ultimately defeated: tongues, like governments, have a natural tendency to degeneration; we have long preserved our constitution, let us make some struggles for our language.

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last twelve weeks of their lives. She revealed the most common regrets of her patients in the best-selling book “The Top Five Regrets of the Dying—A Life Transformed by the Dearly Departing” (Ware). Here were the regrets, starting at #2: 2.I wish I didn’t work so hard. 3.I wish I’d had the courage to express my feelings. 4.I wish I had stayed in touch with my friends. 5.I wish that I had let myself be happier.

Soros had his own reform, promoted by the Open Society Institute, that he saw as compatible with the initiatives that became known as HillaryCare. He called it, with characteristic bluntness, The Project on Death in America.22 Its rationale was compassionate: to embed hospices and "palliative

There had been a time when the mere business of driving a car was a relief to him; when he had found in the un-reality of a long, solitary journey a palliative to his troubled brain, when the fatigue of several hours’ driving had allowed him to forget more sombre cares. It was one of the subtler landmarks of middle age, perhaps, that he could no longer thus subdue his mind. It needed sterner measures now: he even tried on occasion to plan in his head a walk through a European city – to record the shops and buildings he would pass, for instance, in Berne on a walk from the Münster to the university. But despite such energetic mental exercise, the ghosts of time present would intrude and drive his dreams away. It was Ann who had robbed him of his peace, Ann who had once made the present so important and taught him the habit of reality, and when she went there was nothing.

HillaryCare. He called it, with characteristic bluntness, The Project on Death in America.22 Its rationale was compassionate: to embed hospices and "palliative" care in U.S. health policy. But its basic objective was more pragmatic: rationing care to terminal and seriously ill patients for whom medical attention offered little payoff and who were thus a burden on the system. It was the direct forerunner of the "death panels" of ObamaCare that drew fire from the political right in the next decade.

Eight Bells: Robert J. Kane ‘55D died June 3, 2017, in Palm Harbor, Florida. He came to MMA by way of Boston College. Bob or “Killer,” as he was affectionately known, was an independent and eccentric soul, enjoying the freedom of life. After a career at sea as an Officer in the U.S. Navy and in the Merchant Marine he retired to an adventurous single life living with his two dogs in a mobile home, which had originally been a “Yellow School Bus.” He loved watching the races at Daytona, Florida, telling stories about his interesting deeds about flying groceries to exotic Caribbean Islands, and misdeeds with mysterious ladies he had known. For years he spent his summers touring Canada and his winters appreciating the more temperate weather at Fort De Soto in St. Petersburg, Florida…. Enjoying life in the shadow of the Sunshine Bridge, Bob had an artistic flare, a positive attitude and a quick sense of humor. Not having a family, few people were aware that he became crippled by a hip replacement operation gone bad at the Bay Pines VA Hospital. His condition became so bad that he could hardly get around, but he remained in good spirits until he suffered a totally debilitating stroke. For the past 6 years Bob spent his time at various Florida Assisted Living Facilities, Nursing Homes and Palliative Care Hospitals. His end came when he finally wound up as a terminal patient at the Hospice Facility in Palm Harbor, Florida. Bob was 86 years old when he passed. He will be missed….

We can constrain our suffering, and we can face it psychologically. That makes us courageous. Then we can ameliorate it practically, because that is what we do when we care for ourselves and other people. There seems to be almost no limit to that. You can genuinely and competently come to care for yourself and your family. You can then extend that out into the broader community. Some people become unbelievably good at that. People who work in palliative care constitute a prime example. They work continually, caring for people who are suffering and dying, and they lose some of those people every day. But they manage to get out of bed every morning, go to work, and face all that pain, tragedy, and death. They make a difference under virtually impossible circumstances. It is for such reasons and because of such examples—watching people confront the existential catastrophe of life forthrightly and effectively—that I am more optimistic than pessimistic, and that I believe that optimism is, fundamentally, more reliable than pessimism. To come to such a conclusion, and then to find it unshakable, is a good example of how and why it may be necessary to encounter the darkness before you can see the light. It is easy to be optimistic and naive. It is easy for optimism to be undermined and demolished, however, if it is naive, and for cynicism to arise in its place. But the act of peering into the darkness as deeply as possible reveals a light that appears unquenchable, and that is a profound surprise, as well as a great relief.

The first step in retracing our way to health is to abandon our attachment to what is called positive thinking. Too many times in the course of palliative care work I sat with dejected people who expressed their bewilderment at having developed cancer. “I have always been a positive thinker,” one man in his late forties told me. “I have never given in to pessimistic thoughts. Why should I get cancer?” As an antidote to terminal optimism, I have recommended the power of negative thinking. “Tongue in cheek, of course,” I quickly add. “What I really believe in is the power of thinking.” As soon as we qualify the word thinking with the adjective positive, we exclude those parts of reality that strike us as “negative.” That is how most people who espouse positive thinking seem to operate. Genuine positive thinking begins by including all our reality. It is guided by the confidence that we can trust ourselves to face the full truth, whatever that full truth may turn out to be. As Dr. Michael Kerr points out, compulsive optimism is one of the ways we bind our anxiety to avoid confronting it. That form of positive thinking is the coping mechanism of the hurt child. The adult who remains hurt without being aware of it makes this residual defence of the child into a life principle. The onset of symptoms or the diagnosis of a disease should prompt a two-pronged inquiry: what is this illness saying about the past and present, and what will help in the future? Many approaches focus only on the second half of that healing dyad without considering fully what led to the manifestation of illness in the first place. Such “positive” methods fill the bookshelves and the airwaves. In order to heal, it is essential to gather the strength to think negatively. Negative thinking is not a doleful, pessimistic view that masquerades as “realism.” Rather, it is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to? Without these questions, the stresses responsible for our lack of balance will remain hidden. Even more fundamentally, not posing those questions is itself a source of stress. First, “positive thinking” is based on an unconscious belief that we are not strong enough to handle reality. Allowing this fear to dominate engenders a state of childhood apprehension. Whether or not the apprehension is conscious, it is a state of stress. Second, lack of essential information about ourselves and our situation is one of the major sources of stress and one of the potent activators of the hypothalamicpituitary-adrenal (HPA) stress response. Third, stress wanes as independent, autonomous control increases. One cannot be autonomous as long as one is driven by relationship dynamics, by guilt or attachment needs, by hunger for success, by the fear of the boss or by the fear of boredom. The reason is simple: autonomy is impossible as long as one is driven by anything. Like a leaf blown by the wind, the driven person is controlled by forces more powerful than he is. His autonomous will is not engaged, even if he believes that he has “chosen” his stressed lifestyle and even if he enjoys his activities. The choices he makes are attached to invisible strings. He is still unable to say no, even if it is only to his own drivenness. When he finally wakes up, he shakes his head, Pinocchio-like, and says, “How foolish I was when I was a puppet.

I heard a compelling lecture by an African American pastor from the north side of Chicago. He opened his talk with numbers, counting up all of the hours that a God-fearing person in his parish has spent in church over the course of her life. It was a lot. Then he described what is talked about during those hours in church. It’s all about hope, he told us. For change, for a better future, for justice, for relief of suffering. And then he asked the predominantly white audience why we expected our African American patients to give up hope—for a cure, for another chance at life—at this most vulnerable point in their lives. This is a time, he said, when they need hope the most. If the doctor’s only concept of hope and miracles is the cure of disease, then there truly is nothing more to talk about with a family wanting everything done in the name of God. But guided by Betty Clark, the pastor on our palliative care team, I have found other ways of transmitting hope to families looking for a miracle. The miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival—the only concept of hope previously imagined. I have also found it helpful to open up the question of God’s will. Once, a religious family explained to me that they didn’t want to play God by withdrawing the breathing tube from their dying loved one. I asked them whether another interpretation might be that they were playing God by keeping her alive when her body was actively dying. Mightn’t this be God demonstrating that it was her time to die? And were we, in our hubris, thwarting God’s will? Many families agreed with my suggestion that almighty God doesn’t need help from mere mortals. If He wants to heal a body, He can do it on his own.

The unhappy priest was breathing hard; sincere horror at the foreseen dispersal of Church property was linked with regret at his having lost control of himself again, with fear of offending the Prince, whom he genuinely liked and whose blustering rages as well as disinterested kindness he knew well. So he sat down warily, glancing every now and again at Don Fabrizio, who had taken up a little brush and was cleaning the knobs of a telescope, apparently absorbed. A little later he got up and cleaned his hands thoroughly with a rag; his face was quite expressionless, his light eyes seemed intent only on finding any remaining stain of oil in the cuticles of his nails. Down below, around the villa, all was luminous and grandiose silence, emphasised rather than disturbed by the distant barking of Bendicò baiting the gardener’s dog at the far end of the lemon-grove, and by the dull rhythmic beat from the kitchen of a cook’s knife chopping meat for the approaching meal. The sun had absorbed the turbulence of men as well as the harshness of earth. The Prince moved towards the priest’s table, sat down and began drawing pointed little Bourbon lilies with a carefully sharpened pencil which the Jesuit had left behind in his anger. He looked serious but so serene that Father Pirrone no longer felt on tenterhooks. “We’re not blind, my dear Father, we’re just human beings. We live in a changing reality to which we try to adapt ourselves like seaweed bending under the pressure of water. Holy Church has been granted an explicit promise of immortality; we, as a social class, have not. Any palliative which may give us another hundred years of life is like eternity to us. We may worry about our children and perhaps our grandchildren; but beyond what we can hope to stroke with these hands of ours we have no obligations. I cannot worry myself about what will happen to any possible descendants in the year 1960. The Church, yes, She must worry for She is destined not to die. Solace is implicit in Her desperation. Don’t you think that if now or in the future She could save herself by sacrificing us She wouldn’t do so? Of course She would, and rightly.

It seems that part of the moral constitution of a doctor is a commitment not to intend the death of a patient, and to protect them from harm.

It is significant that the major world religions having studied the problem of unrelieved suffering for over 2000 years, have independently concluded that there is no justification for euthanasia or PAS. There

To withdraw life-prolonging treatments when these are no longer of benefit to the patient is to recognise the limits of a doctor's power, allowing the dying person to die as a consequence of their underlying disease. This is clinically, ethically and legally different from deliberately ending life as in euthanasia or PAS." Arguments

Her new mantra was a piece of wisdom given to her by a friend of my sister who specialized in palliative care: “Make Plans and Cancel Them.

In the cloudy swirl of misleading ideas surrounding public discussion of addiction, there’s one that stands out: the misconception that drug taking by itself will lead to addiction — in other words, that the cause of addiction resides in the power of the drug over the human brain. It is one of the bedrock fables sustaining the so-called “War on Drugs.” It also obscures the existence of a basic addiction process of which drugs are only one possible object, among many. Compulsive gambling, for example, is widely considered to be a form of addiction without anyone arguing that it’s caused by a deck of cards. The notion that addiction is drug-induced is often reinforced. Clearly, if drugs by themselves could cause addiction, we would not be safe offering narcotics to anyone. Medical evidence has repeatedly shown that opioids prescribed for cancer pain, even for long periods of time, do not lead to addiction except in a minority of susceptible people. During my years working on a palliative care ward I sometimes treated terminally ill cancer patients with extraordinarily high doses of narcotics — doses that my hardcore addict clients could only dream of. If the pain was alleviated by other means — for example, when patient was successfully given a nerve block for bone pain due to malignant deposits in the spine — the morphine could be rapidly discontinued. Yet if anyone had reason to seek oblivion through narcotic addiction, it would have been these terminally ill human beings. An article in the Canadian Journal of Medicine in 2006 reviewed international research covering over six thousand people who had received narcotics for chronic pain that was not cancerous in origin. There was no significant risk of addiction, a finding common to all studies that examine the relationship between addiction and the use of narcotics for pain relief. “Doubts or concerns about opioid efficacy, toxicity, tolerance, and abuse or addiction should no longer be used to justify withholding opioids,” concluded a large study of patients with chronic pain due to rheumatic disease. We can never understand addiction if we look for its sources exclusively in the actions of chemicals, no matter how powerful they are.

Euthanasia is not legal but it is being practiced. Last

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We washed her body, chanted, and stayed to witness the funeral director shrouding her and whisking her down the hall. I thought of the Zen teaching that talks about how all we need to do is allow ourselves and the world to change. Easy to say, I thought. And yet, here I was in the midst of my experience of fullness of the pain, grief, love, and joy of my grandma’s death. Everything did change. Everything I teach now I learned from my relationship with Mimi. Being deeply in relationship changes the world. I didn’t know then that my life would pivot to teaching others and to being with many, many Mimis.

We get paid much more to keep someone on dialysis than to keep them off of it. If we don’t achieve dialysis metrics—like avoiding dialysis catheters or providing a certain dose of dialysis—known to best result in long-term benefits, we are financially penalized. But create a fistula in a little old lady that usually requires interventions to make it work and keep it working and make her stay on the dialysis machine as long as it takes for the numbers to look right, then essentially get a bonus. If we see an in-center hemodialysis patient four times in a month, we stand to make 50 percent more money than if we only saw her once. And the nephrologist really only has to see the patient once each month—if a physician assistant sees the patient the other times, we still get paid. We would have to document a comprehensive medical history and examination over the better part of an hour with a patient returning to clinic twice to see the same money—and good luck trying to justify why that was clinically necessary to do. The second, third, and fourth in-center hemodialysis patient visits can be more like drive-bys—a simple documentation that we (or the physician assistant) “saw” the patient, with no notation of time required. Private insurance companies and the Medicare ESRD program pay top dollar for dialysis care, not clinic visits. It’s profitable to build another dialysis center, but we haven’t figured out how to build comprehensive outpatient palliative care services.

When time is running out, caring is the only thing that matters or makes sense between beings now in the world, soon out — this giving and receiving, this intimate sharing of our inherent fragility and limited time.

A CEMENT WALL A few years ago, two patients found themselves sharing a room in the palliative care unit of a hospital. Luis, in the bed next to the window, would talk to Daniel. Every day he would tell him, in luxuriant detail, what happened in the street. Mostly he narrated the adventures—seen from the window—of a family who lived near the hospital. The mother would often play with her children in the garden. He spoke naturally and with grace, although his voice was slurred from the chemotherapy. For Daniel, the last months of his life were rendered entertaining by his roommate. On those days when they were alone, without family or friends, Luis would say, “Shall I tell you what I see?” Daniel’s eyes would light up. And a recital would begin that might last hours. Months later, Luis passed away, and within a few days his bed was occupied by another patient. Daniel, excited by the thought that he would once again be able to hear the stories his friend had told him, asked his new companion to inform him about the children in their garden. The response stunned him: “There’s no garden here, just a cement wall.” Luis had used his imagination—his one remaining resource—to make up stories that would entertain Daniel. Using empathy, Luis had been capable of putting himself in his comrade’s shoes and successfully got him excited about something, helping him to overcome the suffering caused by his illness.

down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding? The field of palliative care emerged over recent decades to bring this kind of thinking to the care of dying patients. And the specialty is advancing, bringing the same approach to other seriously ill patients, whether dying or not. This is cause for encouragement. But it is not cause for celebration. That will be warranted only when all clinicians apply such thinking to every person they touch. No separate specialty required. If to be human is to be limited,

Last Comforts” was born when one nagging question kept arising early in my journey as a hospice volunteer. Why were people coming into hospice care so late in the course of their illness? That question led to many others that rippled out beyond hospice care. Are there better alternatives to conventional skilled nursing home operations? How are physicians and nurses educated about advanced illness and end-of-life care? What are more effective ways of providing dementia care? What are the unique challenges of minority and LGBT people? What is the role of popular media in our death-denying culture? What has been the impact of public policy decisions about palliative and hospice care? The book is part memoir of lessons learned throughout my experiences with patients and families as a hospice volunteer; part spotlight on the remarkable pathfinders and innovative programs in palliative and late-life care; and part call to action. I encourage readers – particularly my fellow baby boomers -- not only to make their wishes and goals clear to friends and family, but also to become advocates for better care in the broader community.

But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.

hospice care would be assigned to them and while they would see that nurse most frequently, hospice care entailed a team—very much like our palliative care team, which they had come to know—with a physician, chaplain, social worker, and even volunteer visitors.

discussion. It now seemed possible that team-based palliative care extended life to a degree comparable to newer immune-based chemotherapy drugs that may cost $6,000 to $10,000 per month and can cause rashes, bleeding, infection, and other life-threatening side effects. In contrast, team-based palliative care for a patient and family typically costs several hundred dollars per month and does not cause rashes, bleeding, or infections.

there are ways of controlling the discomfort bowel obstructions cause without surgery, but doing so would take palliative care expertise of the sort that a hospice program provides.

Marcin Chwistek is a physician who specializes in cancer pain management and palliative care.

those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer.

The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.

Palliative care, the branch of medicine that focuses on symptom relief and comfort, had been perceived as the antimatter of cancer therapy, the negative to its positive, an admission of failure to its rhetoric of success.

enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding? The field of palliative care emerged over recent

We are all terminally ill. Not one of us is going to survive. And our stories are delusions. Each one of us lives in The Matrix—a story-dream created by our minds. Happiness is not easy; meaning is elusive. Young, healthy people who find themselves miserable, or find that they no longer inhabit a story, have even more need of the kind of “palliative care” that we offer to terminally ill people, simply because young people have so much more time to get through. Eighty years! Ninety years! A hundred years of epilogue ahead of us? It’s crushingly boring to ponder.

I have reached the point in life where I no longer accept false hopes, the palliative care of counterfeit wisdom.

Changing the way LGBTQ individuals with chronic or life-limiting illnesses are cared for requires a paradigm shift in the way we (collectively, as health care professionals) approach the conversation about what it means to be inclusive in our compassion. You don’t need to change your religious or moral beliefs to provide good care to LGBTQ individuals.

These issues are not unique to LGBTQ individuals, and you should be aware of them as you begin working with any new patient and family. LGBTQ

CAMPERS is a seven-step process you can use to improve your ability to provide inclusive, nonjudgmental care when you are planning, engaging in, and reflecting on a patient interaction. The letters in the mnemonic device stand for: clear purpose, attitudes and beliefs, mitigation plan, patient, emotions, reactions, and strategy.

When I wrote the book [LGBTQ-Inclusive Hospice and Palliative Care], I was filled with a sense of hope for the future. Barack Obama was the president of the United States, and it felt like real progress was being made in the areas of health care and lesbian, gay, bisexual, transgender, gender-nonconforming, queer, and/or questioning rights. During Trump’s first 100 days, I’ve felt the sands of that progress shift backward down a sloping dune beneath my feet. -- From "The Challenge of Staying Hopeful in the Age of Trump," The Advocate, April 28, 2017

the degree to which an individual is healthy, comfortable, and able to participate in or enjoy life events

Neve leans against the wall next to his desk, arms crossed. “Do you want to know the most common deathbed regret for men? According to this palliative-care nurse?” “Not especially.” “I wish I hadn’t worked so hard.” She says it triumphantly, as if she has just proved a point and he will now leap up from his desk and stop working so hard. Leo says, “Those dying men forget they needed to work and that’s the reason they now have the money to pay for a nurse to listen to them bang on about their regrets. They’re also forgetting they wanted to work. They can’t actually remember the person they used to be.” Neve considers this. One of the things he has always loved about her is that she will always stop and consider an opposing view. She says, “Maybe you’re right.

In a medical context, such an etiology can mean that some Hindus would welcome suffering rather than try to alleviate it. Palliative care, for example, may not be desirable if the Hindu believes that her suffering is the expression and manifestation of pāpa (demeritorious) karma. A Hindu may believe that relieving suffering may merely delay the manifestation of pāpa karma. The relief, then, would only be temporary and may even incur more pāpa and prolong or intensify the inescapable.

Given the toll dementia can have on personal health, often in advanced age, dementia may also be the final chronic disease diagnosed in someone, which raises a whole host of important and unfortunately often overlooked issues related to palliative care. A dementia diagnosis may challenge, change, and strain your family structure in many and unexpected ways, potentially over the course of many years. This is impossible to avoid,

In Bronnie Ware’s book The Top Five Regrets of the Dying, based on her deep conversations with the dying as a palliative care worker, she doesn’t reveal that most people regret not being more successful when they’re on their deathbed. They don’t regret not having achieved more. In fact, the top five regrets were: Wishing they’d had the courage to live a life more true to themselves rather than the life others expected of them. Wishing they hadn’t worked so hard. Wishing they’d had the courage to express their feelings. Wishing they’d stayed in touch with their friends. Wishing they’d let themselves be happier.

A passionate Marxist journalist - waiting for the revolution, rejecting all 'palliatives' - told me that the 'workers' of India had to be politicized; they had to be told that it was the 'system' that oppressed them. After nearly thirty years of power, the Congress has, understandably, become the system. But where does the system begin and end? Does it take in religion, the security of caste and clan, Indian ways of perceiving, karma, the antique serfdom? But no Indian cares to take political self-examination that far. No Indian can take himself to the stage where he might perceive that the faults lie within the civilization itself, that the failure and the cruelties of India might implicate all Indians. Even the Marxists, dreaming of a revolution occurring like magic on a particular day, of tyranny swept away, of 'the people' then engaging in the pleasures of 'folk' activities - the Marxist journalist's word: the folk miraculously whole after the millennia of oppression - even the Marxist's vision of the future is not of a country undone and remade but of an India essentially returned to itself, purified: a vision of Ramraj.

Bronnie Ware, an Australian palliative care nurse, became famous for her arresting writings and book, The Top Five Regrets of the Dying, about her patients in the final twelve weeks of life. Though her list has been widely published, it can’t be shared often enough. If not for the heaviness of its message, it should be posted on every fridge and bathroom mirror for every person on this earth to reread daily. The top five regrets of dying people were: I wish I’d had the courage to live a life true to myself, not the life others expected of me. I wish I hadn’t worked so hard. I wish I’d had the courage to express my feelings. I wish I had stayed in touch with my friends. I wish that I had let myself be happier.

BJ Miller BJ Miller (TW: @zenhospice, zenhospice.org) is a palliative care physician at the University of California at San Francisco and an advisor to the Zen Hospice Project in San Francisco. He thinks deeply about how to create a dignified, graceful end of life for his patients. He is an expert in death. Through that, he’s learned how we can dramatically improve our own lives, often with very small changes. He has guided or been involved with ~1,000 deaths, and he’s spotted patterns we can all learn from. BJ is also a triple amputee due to an electrocution accident in college. His 2015 TED talk, “What Really Matters at the End of Life,” was among the top 15 most viewed TED talks of 2015.

As a specialist in palliative care, he’d explained that he saw enough to be sure that once someone decided they had had enough of living, they could shut themselves down. Medicine from that point on could only keep someone alive artificially. Once the spirit rests, then so too does the body.

But grounding and gratitude were palliative care versus curative care. I was still treating the symptoms without treating the source, and I would never truly be healed unless I confronted it. Now that I had stabilized the present, it was time for me to dive back into the past.

Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill. [...] About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.

As priorities change, regrets may surface. Bronnie Ware, an Australian nurse working in palliative care, recorded what she perceived to be the top five regrets of the dying. They were: I wish I’d had the courage to live a life true to myself, not the life others expected of me. I wish I hadn’t worked so hard. I wish I’d had the courage to express my feelings. I wish I had stayed in touch with my friends. I wish that I had let myself be happier.

If the Democratic Party wants to win, then they should actually do something for the multi-racial working class instead of just changing the race of the so-called “leader” that runs palliative care for the working people in the giant hospice that both rural and urban America have become.

Bronnie Ware, a palliative care nurse who served patients for the final weeks of their lives, wrote a moving article called “Regrets of the Dying.” She shared the five most common regrets of the people she had come to know: 1. I wish I’d had the courage to live a life true to myself, not the life others expected of me. (“Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.”) 2. I wish I hadn’t worked so hard. 3. I wish I’d had the courage to express my feelings. (“Many people suppressed their feelings in order to keep peace with others.”) 4. I wish I had stayed in touch with my friends. 5. I wish that I had let myself be happier. (“Many did not realize until the end that happiness is a choice. They had stayed stuck in old patterns and habits.”)

...these teachings (the Buddhist teachings on death) do not explain anything or fix anything or armor you against pain. They only clear the ground for what there is to be felt at the time of loss. Norman Fisher

The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

But Arnold had also recommended a strategy palliative care physicians use when they have to talk about bad news with people—they “ask, tell, ask.” They ask what you want to hear, then they tell you, and then they ask what you understood. So I asked.

There were no books to help me so I wrote the book

Spiritual care lies at the heart of hospice. It says we are here. We will be with you in your living and your dying. We will free you from pain and give you the freedom to find your own meaning in your own life – your way. We will comfort you and those you love – not always with words, often with a touch or a glance. We will bring you hope – not for tomorrow but for this day. We will not leave you. We will watch with you. We will be there. – Dr. Dorothy Ley

Family meetings are a procedure,” a prominent palliative care physician named Susan Block had once said, “and they require no less skill than performing an operation.

In places that allow physicians to write lethal prescriptions—countries like the Netherlands, Belgium, and Switzerland and states like Oregon, Washington, and Vermont—they can do so only for terminally ill adults who face unbearable suffering, who make repeated requests on separate occasions, who are certified not to be acting out of depression or other mental illness, and who have a second physician confirming they meet the criteria. Nonetheless, the larger culture invariably determines how such authority is employed. In the Netherlands, for instance, the system has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.

A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

The first two jobs revolutions had in common one trait—people of average or even below-average intelligence could do many of the jobs with no more than a high school education. Will that be true in the digital, high tech third wave? And if it is not, what will be the consequences of living in a society where the brightest and hardest working are rewarded and almost everyone else is reduced to servant-level jobs and wages? Among leading economists, the belief is nearly universal that this third revolutionary wave rolling across the globe is so powerful that nothing can stop it or even alter its course. There are, Blinder says, no cures, just palliatives. He suggests spending more on job retraining, changing the education system for the future, making health care available to all whether they have a job or not, and improved protections for pensions.

a main theme for many of the participants in these trials is realizing how important their relationships are, how their response to their illness is negatively affecting the people they love, and that they want to spend the last chapter of their lives enjoying the presence of others.45 “It helps people live until they die,” Richards tells me, “not just lie in their beds, feeling sorry for themselves and preoccupied with pain. It could transform palliative and hospice care dramatically in the next few years. It’s a very exciting frontier.

Nothing exposes the seams of a group faster than the fraught world of care. More than death, care reveals too much about a personality to ever be discussed neutrally. Vaccines, palliative care, capacity to consent to treatment, what constituted serious illness, the use and abuse of a taxpayer-funded system: try them on a dinner party and watch the pack animal bite its way through the skin.