Hospice Care Quotes

Never take life for granted. Savor every sunrise, because no one is promised tomorrow…or even the rest of today.

Death should not be viewed as a medical failure but as a natural conclusion to life.

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.

When I reflect on the stories of death supported by hospice care and contrast it with our story depicting an absence of support, I find myself dealing with envy and anger. I have channeled those emotions into this book with the hope that hearing our story might give someone else a chance to create a better ending to the life of a loved one.

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.

If we listen and observe carefully the dying can teach us important things that we need to learn in preparing for the end of our own life's journey.

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.

Such was the case with dead bodies. Every time you opened the box you could find anything from a ninety-five-year-old woman who died peacefully under home hospice care to a thirty-year-old man they found in a dumpster behind a Home Depot after eight days of putrefaction. Each person was a new adventure.

A great deal of tenderness, but it was the tenderness of a hospice nurse - of one committed to caring but too familiar with pain and parting to every truly or fully invest.

What life she had left could be measured in hours. Small recompense though they were, they belonged to me now. I had only to claim them.

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.

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.

Where there were once several competing approaches to medicine, there is now only one that matters to most hospitals, insurers, and the vast majority of the public. One that has been shaped to a great degree by the successful development of potent cures that followed the discovery of sulfa drugs. Aspiring caregivers today are chosen as much (or more) for their scientific abilities, their talent for mastering these manifold technological and pharmaceutical advances as for their interpersonal skills. A century ago most physicians were careful, conservative observers who provided comfort to patients and their families. Today they act: They prescribe, they treat, they cure. They routinely perform what were once considered miracles. The result, in the view of some, has been a shift in the profession from caregiver to technician. The powerful new drugs changed how care was given as well as who gave it.

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

That churchgoers do the lion's share of the charitable work in our communities is simply untrue. They get credit for it because they do a better job of tying the good works they do to their creed. But according to a 1998 study, 82% of volunteerism by churchgoers falls under the rubric of "church maintenance" activities -- volunteerism entirely within, and for the benefit of, the church building and immediate church community. As a result of this siphoning of volunteer energy into the care and feeding of churches themselves, most of the volunteering that happens out in the larger community -- from AIDS hospices to food shelves to international aid workers to those feeding the hungry and housing the homeless and caring for the elderly -- comes from the category of "unchurched" volunteers.

And where was the support for that kind of preparation? There are all kinds of medicines and medical devices and clinics and even hospice care to prolong life and make it as easeful as possible—but who helps you to really prepare for it, philosophically? Who teaches you how to embrace it? Is there anyone out there who really does that?

Stella Maris Black River Falls, Wisconsin Established 1902 Since 1950 a non-denominational facility and hospice for the care of psychiatric medical patients.

Hospice care? No, you must mean Frisbee game. Because there's no way my brother and I aren't outside right now playing Frisbee in the middlle of the street in the middle of summer and there are weird bugs everywhere no matter how much bug spray we put on ourselves and our mom is coming out to tell us for the third and final time, C'mon inside kids, it's getting dark.

The West’s unique and, when you thought about it, surprising ideal—that a society should take care of its sick poor—had originated in those monastic hospices and infirmaries of the Middle Ages. But

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.

Two-thirds of the terminal cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.

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.

Xavi never did see the end of the Iraq War; he died at the peak of the pandemonium there, though he’d stopped caring, having receded from the world in stages: aware of just the hospice, then just his room, then his bed, then his body, then nothing.

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

My family were playing out an age-old scene that I suppose is rarely seen now in the modern world, where we die in impersonal hospitals or hospices, cared for by caring professionals, whose caring expressions (just like mine at work) will disappear off their faces as soon as they turn away, like the smiles of hotel receptionists.

In this country, we think of dying primarily as a medical event. It’s much more than that. It’s about relationships: to ourselves, those we may be caring for, or those caring for us. Caring for the dying can be an intense, intimate, and deeply enlivening experience. Death can be an extraordinary mirror through which we see ourselves.

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.

Mabel went on, and you Petites Cendres, you haven’t forgotten we’re throwing a party for your Doctor Dieudonné, oh yes, soon as he gets back, the entire Black Ancestral Choir’s going to celebrate Dieudonné, man of God taking care of the poor and never asking for one cent, why did he have to go away said Petites Cendres, carefree in the comfort of his bed, wasn’t his clinic enough, he mumbled into the dishevelled folds of his sloth, I mean why go volunteer there when we’re holding a party for him right here, Mabel’s singsong voice cut in, going from deep to nasal, he’s getting the town’s medal of honour for doctoring all you lazy layabouts and lost souls, and running two hospitals and a hospice, our very own choir director’s going to give him his plaque with those same fingers and long thin red nails of hers, the ideal man, says the doctor, is not one who piles up money but one who saves lives, why he’s even helped our Ancestral Choir a whole lot too, he’s going to need a nice black tuxedo, just what he hates, and Eureka, the head of the choir, will be so proud that day when Reverend Ézéchielle invites us all to sing in her church,

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….

As the years go by and I grow older, I feel compelled to record my experiences in wartime Germany. It is important that my children, grandchildren and future generations know about the difficult times we all endured and of the horrors that existed in Nazi Germany during the Second World War. Due to my advanced age and present condition, I am aware of the urgency to document my memories. If I fail in this, I will fail those who follow me, for they will never know!” Adeline Perry This book had its origin many years ago when Adeline Perry tried to recount her experiences and found that she would become overcome by her emotions every time she tried. The horrors and trials that she had experienced, plus the responsibility of raising her two daughters proved to be overwhelming. It was not until the twilight of her life when her daughters gently persuaded her to try again so that future generations might hear and perhaps learn from her experiences. In fact a good portion of these manuscripts were written while she was in the care of Hospice and only now survive because of immense personal strength and devotion to her family and the desire that what had happened to her would never happen again. Her daughter, and my wife, Ursula can take a great deal of pride in the effort it took to make these manuscripts a reality. After Adeline’s passing I had the privilege to develop the book Suppressed I Rise. Staying true to her story I gave her the authorship of the first edition of this book, which adhered to, and did not exceed what she had left in her original manuscripts. This book which was printed in limited numbers became an instant success and deserved more exposure. Readers also felt that there were questions that went unanswered requiring a follow-up. How did Adeline justify going to Germany prior to World War II? What happened to her marriage to Richard and how did she resume her own life, as a single mother, when she returned to South Africa! With additional reflections by her daughters Brigitte Grigsby and Ursula Bracker, and travel to the areas discussed in Suppressed I Rise, I expanded the book to include the prewar years. I also corrected minor contradictions and factual discrepancies that were inadvertently caused by the passage of time. Talking to people in Germany I confirmed some of what had happened including the hanging of the Russian prisoner of war. The book has now become a powerful example of not only personal courage but also of human tragedy. It is a book that I am proud to have written and share in the concept that it was a story that had to be told.

For a certainty I have come to know that hospice is not a place but a philosophy of care.

Like many other people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies find otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or end-stage congestive heart failure. For the patients with breast cancer, prostate cancer, or colon cancer, the researchers found no difference in survival time between those who went into hospice and those who didn’t. And curiously, for some conditions, hospice care seemed to extend survival. Those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months.

10. What realities are captured in the story of Lou Sanders and his daughter, Shelley, regarding home care for an aging and increasingly frail parent? What conflicts did Shelley face between her intentions and the practical needs of the family and herself? What does the book illustrate about the universal nature of this struggle in families around the globe? 11. A key concept that emerges from the author’s interviews is “home.” Much more than just the place where you go to bed at night, home evokes a set of values and freedoms for many as they face old age. As you consider the life you want lead in old age, what does home mean to you? 12. Reading about Bill Thomas’s Eden Alternative in Chapter 5, what came to mind when he outlined the Three Plagues of nursing home existence: boredom, loneliness, and helplessness? What do you think matters most when you envision eldercare? 13. What can be learned from the medical treatment choices that were made in the final days of Sara Monopoli’s life? 14. What are your feelings about hospice care? When is the appropriate time to introduce hospice in the treatment of those with life-threatening illness?

Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that in order to save his life they would need to go back in. But the bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever. What did she want to do? “I had three minutes to make this decision, and I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the okay to take him back to the operating room. “If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he was faced with a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided. During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. Eventually, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, just a few months before I’d spoken with Block, her father decided to stop the battle and go home. “We started him on hospice care,” Block said. “We treated his choking and kept him comfortable. Eventually, he stopped eating and drinking. He died about five days later.

There exists a home for senior dogs where sick, handicapped old mutts live out their days in a homey setting. They are given a great deal of individual attention and, if necessary, hospice care. It’s run by an organization called the Djimba Foundation. There’s a drawing on the Djimba site of a blind guide dog with a cane and dark sunglasses. I am not making this up.

As Christians, we as a community of believers have a responsibility to aid those among us facing severe illness, through hospice and other support.

Packing up a suitcase is not unusual in hospice care. Talking about an upcoming trip is also not unusual. Through the fog of disease and effects of treatments, the patients often know they’re going somewhere else.

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.

Too Soon to Say Goodbye, Buchwald writes about how he came to be admitted to a hospice facility in the Washington, D.C.,

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.

not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—

Your child has Down Syndrome. This is why the government requires an amniocentesis during the first trimester, to filter out potential problems to the stability of our health care system. Why did you not have it aborted?” “We were going to keep our child, no matter what happened. I felt that submitting to an amniocentesis was against my religious beliefs. We do not abort children,” replied Lynda through gritted teeth. “You religious types think you can just do what you want, in spite of government regulations. If it weren’t for the Amish, Mennonite, Mormon, and other fringe groups like yourselves, our genetic pool wouldn’t be polluted with genetic mistakes. Due to your attitudes, we have to pay for these problems throughout their lives. We have to give them long-term health care, pay for specialized schooling, and even hospice care when their old and gray. They do nothing to add to the overall condition of their fellow man. We could have done something immediately if you had done what was required, but this mistake will now take years to correct. If you so-called True Believers were out of the way, the overall condition of America would greatly improve. But, we do not make those laws, in spite of our best efforts.

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.

The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as

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.

hospice care? Some of the services are as follows: Home visits by specialty trained hospice nurses and Medical Director Pain management and symptom control Personal hygiene care from certified home health aides All medications related to the terminal diagnosis All specialized therapies required for the terminal diagnosis Psychosocial, spiritual, and grief support services Volunteers as requested

The author "nails it" in terms of how to deal with a parent's dementia. Rather than browbeating the subject, the author "plays along" and tries to enter the subject's own dementia-challenged "reality." The book contains excellent coping strategies and methodology for dealing with someone suffering with and enduring the pain of dementia or Alzheimer's. It does so with sensitivity, candor and laugh-provoking humor.

Early July 2012 In one of Andy’s responses, my ex-lover wrote, Young, That sounds great! I look forward to co-writing the fourth book of A Harem Boy Saga with you. This will provide us time to map out the outline of our joint project during the course of our correspondence. As much as I’d love to work with you on this project, I want to be sure that Walter is okay with us going into this venture together. I have no desire to upset your loving relationship and certainly have no wish to be an unwelcome intruder into your lives. Let me know if he agrees. When I was in hospital recovering from my nervous breakdown, I met Jack, a 24-year-old nursing student. He cared for me during my recovery. We dated for several months before his transfer to a hospice in a different city. I did not have the courage to tell Toby that Jack and I were dating. I was afraid Toby would threaten suicide again, until the fateful evening when he discovered Jack and me making out in my flat. My caregiver and I had proceeded to my lodgings after a scrumptious dinner one evening. After several glasses of wine while watching television, Jack leaned his head against my shoulder. His dreamy, doe-like eyes looked adoringly at me, reminding me of your beautiful Asian eyes staring at me during our intimate moments together. Our kisses soon led to lingering sensual foreplay. Before long, our clothes were scattered all over. Jack went on his knees, eagerly caressing my growing hardness and wrapping his luscious lips around me under my briefs. Easing down my underwear, he went to work. His sweetness stirred my longing for you. Closing my eyes to savor his warm fallation, I reclined against the comfortable sofa and enjoyed the pleasurable sensation showered upon my erection. He engulfed my pulsating manhood, suckling away as if to satisfy his hunger. It was similar to the way you used to relish my hardness for hours on end. Like you, he pleasured me with deep, devotional worship; I was overwhelmed by his sexual imperativeness, wanting his warmth to wash over my entirety. His expert titillation did wonders for my soul, causing me to spasm involuntarily. He devoured my length as if deprived of nourishment while I nurtured my feed into Jack’s bobbing head, pressing him against my quivering palpitations.

I urge, then, first of all, that petitions, prayers, intercession and thanksgiving be made for all people. —1 Timothy 2:1 (NIV) In the middle of a busy morning at the office, I’d just finished a long e-mail to a colleague when the phone rang. I didn’t recognize the number but answered. A faint voice said, “I’m Bernadette.” “I’m Rick Hamlin,” I replied, trying to remember if there was a Bernadette in any story I was working on. “May I help you?” “I need someone to pray for me,” she said. “My friend Mary is very sick from cancer. They’ve just put her on hospice care. I don’t know what to do…” Her voice broke. “You need to speak to someone at OurPrayer…,” I started to say. OurPrayer is our ministry here at Guideposts with dedicated, trained staff members and volunteers who pray for people on the Web and on the phone. But if I transferred the call, Bernadette might hang up, lose her nerve. I couldn’t put her on hold. “Tell me about your friend,” I said. They knew each other from childhood. They talked on the phone every day. The cancer had come very quickly. Bernadette was in shock. Each time she visited her friend, she was afraid of dissolving in tears. “If I could just pray with someone,” she said. I found myself asking, “Want me to pray with you right now?” “Yes, please,” she said. I closed my eyes and lowered my voice, hoping none of my colleagues would interrupt. I’m not sure what I said, but I trusted that the right words would come. “Be with Mary and Bernadette,” I ended. “Amen.” “Amen,” Bernadette said. “Thank you, sir. That was nice of you.” She hung up, and I returned to work. Maybe Bernadette was supposed to get my number. Perhaps praying for her was the most important thing I would do all day. Dear Lord, let me know how to say yes when You call. —Rick Hamlin Digging Deeper: Eph 6:18; Col 4:2

1.    Define and articulate the role and functions of social work in end-of-life care in a consistent manner across all settings. 2.    Address negative public and professional perceptions of social work internally and externally. 3.    Identify and articulate specific and unique contributions of the social work profession in end-of-life care. 4.    Facilitate and promote end-of-life social work research that demonstrates the utility and efficiency of social work in hospice. 5.    Facilitate collaborative advocacy at the macro level to ensure access to quality interdisciplinary end-of-life care for all people. 6.    Actively challenge shortsighted cost-saving initiatives that minimize the psychosocial and spiritual components of care for patients and families. 7.    Develop standards for effective models of practice in end-of-life care.

And as they came out, they found a man of Cyrene, Simon by name: him they compelled to bear his cross. —Matthew 27:32 (KJV) WEDNESDAY OF HOLY WEEK: GOD IS IN THE DETAILS Which cliché do you abide by: The devil is in the details or God is in the details? No matter; something extraordinary is in the details. Take for instance that single line about Simon of Cyrene. Maybe the Romans forced Simon to help; maybe he would’ve offered this small gift anyway. In either case, Jesus accepted. A cynic might note that Jesus didn’t have much choice, but that misses the point: Jesus had lots of choices. He could have wiggled out of the whole mess with Pilate. He could have chosen a quicker execution. He could have skipped the whole proceeding. He did not. Our youngest daughter, Grace, has talked about becoming a hospice worker when she grows up. She’s seen two grandparents die in hospices. She has seen the kind of people who work there: kind people. Maybe it’s a job; maybe economic circumstances compelled them to work there—does it matter? Fact is, they’re there, in someone’s time of need, to assist others on their journey, to make their passing less difficult. Are we compelled to help others or do we offer? I’m guessing that the person whose burden is suddenly lightened by our presence doesn’t really care what brought us to that moment. Those are just details…and I think God is, most assuredly, in the details. Lord, You said that what we do for the least of our brothers and sisters we do for You. Help us to see You in everything we do in our everyday lives, even in the tiniest details. —Mark Collins Digging Deeper: Ps 147:4–5; Lk 12:6–7

But at least he’d died at home and not some hospice. Who in their right mind wanted to die among the dying? Or surrounded by a load of caring, sharing hospice nurses hell-bent on making sure you’d drawn up a “good death plan.” If you were having an OK day, somebody might wheel you into the hospice garden and sit you on a wooden bench donated by relatives of a former dying person. From there you would, no doubt, have an uninterrupted view of the ornamental fountain and fiberglass flamingos.

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

To the Worst Wingman Ever, You, kind sir, have restored my faith in humanity. I did see the sensor alert. I stopped and put air in it before I parked it the first time you saw it. I was hoping it was just a slow leak and I could put off going to a tire store until my schedule opens up a bit, but I guess the plan failed. I’m a hospice nurse. I’m caring for someone in the building, and it’s been very time consuming and mentally and emotionally draining. I think coming out and seeing a flat tire would have done me in. I can’t thank you enough for helping me. Here’s a small token of my appreciation. I trust your anxiety over the air in my tire will ensure you find this before a thief does. If it doesn’t and a thief is reading this instead of you, have the day you deserve, jerk. —H.

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

These particular beliefs are being challenged—God as supernatural being up there, out there; humans as the center and point of creation; Christianity as the true religion; Christianity as singularly about individual salvation; the Bible as consistent, not contradictory; you can add to the list. Christians in our day are being pressed to reflect on cherished beliefs. Their foundations are shaking. Some seize the opportunity. Others dig in and resent the challenge of this inner, theological work. Jesus references the “winnowing fan that separates the grain from the chaff” (Matt 3:12). Isn’t this a part of what you do? You help parishioners separate the wheat from the chaff, letting go what’s not alive and retaining what’s lifegiving. Each letting go is a loss. Each one is an experience of dying. It’s grief work. It’s hospice chaplaincy. With patience and tender care you invite members to grieve the loss of what was but no longer contains vitality for them.

I also took care of a four year-old that was in the dying process. Both of his parents were already dead. His maternal grandparents were caring for him. In the weeks before he died he told everyone he was taking a trip, that he was going to live with his “parents.” In the hours before his death, he began looking around the room as if searching for something or someone. We asked him what he was doing, and he told us he was looking for his mother. It was as if the room was filled with people we couldn’t see. Just before he died, he raised his arm, pointed to the corner of his room and called his mother by name. He stayed focused on that corner until his last breath. You can’t convince me his mother wasn’t there to help him make the change from this world to the next. We do not die alone!

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.

On November 22nd, 2018, my mother Vernita Lee passed away. I was conflicted about our relationship up until the very end. The truth is, it wasn't until I became successful that my mother started to show more interest in me. I wrestled with the question of how to take care of her - what did I owe the woman who gave me life, The bible says 'honor thy father and mother', but what did that actually mean? I decided one of the ways I could honor her would be to help care for her financially ... but there was never any real connection. I would say that the audience who watched me on television knew me better than my mother did. When her health began to decline a few years ago, I knew I needed to prepare myself for her transition. Just a few days before Thanksgiving my sister Patricia called to tell me she thought it was time. I flew to Milwaukee ... I tried to think of something to say, at one point I even picked up the manual left by the hospice care people. I read their advice thinking the whole time, how sad it was that I, Oprah Winfrey, who had spoken to thousands of people one on one should have to read a hospice manual to figure out what to say to my mother. When it was finally time to leave, something told me it would be the last time I'd ever see her but as I turned to go, the words I needed to say still wouldn't come. All I could muster was 'bye, I'll be seeing you' and I left for, ironically, a speaking engagement. On the flight home the next morning a little voice in my head whispered what I knew in my heart to be true: "you are going to regret this, you haven't finished the work". ... I turned around and went back to Milwaukee. I spent another day in that hot room and still no words came. That night I prayed for help. In the morning I meditated, and as I prepared to leave the bedroom I picked up my phone and noticed the song that was playing - Mahalia Jackson's 'Precious Lord'. If ever there was a sign, this was it. I had no idea how Mahalia Jackson appeared on my playlist. As I listened to the words, Precious Lord, take my hand Lead me on, let me stand. I am tired, I'm weak, I am worn Lead me on to the light, Take my hand, precious Lord And lead me home. I suddenly knew what to do. When I walked into my mothers room I asked if she wanted to hear the song. She nodded, and then I had another idea. I called my friend Wintley Phipps, a preacher and gospel artist, and asked him to sing Precious Lord to my dying mother. Over FaceTime from his kitchen table he sang the song a cappella and then prayed that our family would have no fear, just peace. I could see that my mother was moved. The song and the prayer had created a sort of opening for both of us. I began to talk to her about her life, her dreams, and me. Finally the words were there. I said, "It must have been hard for you, not having an education, not having a skill, not knowing what the future held. When you became pregnant, I'm sure a lot of people told you to get rid of that baby." She nodded. "But you didn't", I said. "And I want to thank you for keeping this baby". I paused, "I know that many times you didn't know what to do. You did the best you knew how to do and that's okay with me. That is okay with me. So you can leave now, knowing that it is well. It is well with my soul. It's been well for a long time." It was a sacred, beautiful moment, one of the proudest of my life. As an adult I'd learned to see my mother through a different lens; not as the mother who didn't care for me, protect me, love me or understand anything about me, but as a young girl still just a child herself; scared, alone, and unequipped to be a loving parent. I had forgiven my mother years earlier for not being the mother I needed, but she didn't know that. And in our last moments together I believe I was able to release her from the shame and the guilt of our past. I came back and I finished the work that needed to be done.

Patients who choose hospice care live on average about a month longer than similar patients who do not choose hospice

Of all the fields I imagined Alyssa doing, hospice would have been my last choice. It seems like by definition, hospice medicine calls for a physician who is remarkably kind and caring—everything Alyssa was not. Unless it was one of those things where after dealing with Alyssa, you’re just kind of glad to die. That was probably it.

He sees his mom every week now. She is sixty-six years old and in five years will exhibit the first symptoms of the glioblastoma brain cancer that will kill her. In six, she won’t recognize him or be able to carry a conversation, and she will die in hospice care soon after, a wasted husk of herself. He will hold her bony hand in her final moments, wondering if she is even capable of registering the sensation of human touch in the annihilated landscape of her brain. Oddly, he finds no sadness or despair knowing how and when her life will end. Those last days feel untouchably remote as he sits in her Queens apartment the week before Christmas. In fact, he considers the foreknowledge a gift. His father died when Barry was fifteen from an aortic aneurysm, sudden and unexpected. With his mom, he has years to say goodbye, to make certain she knows he loves her, to say all the things that are in his heart, and there is immeasurable comfort in that. He has wondered lately if that’s all living really is—one long goodbye to those we love.

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.

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.

In the 1970s, attitudes slowly began changing. In England, Cicely Saunders, a nurse and researcher, opened a hospice that treated terminal cancer patients with opiates. Under Saunders, St. Christopher’s Hospice in London was the world’s first to combine care for the dying with research and clinical trials.

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

A doctor might say, “There’s a chance your mother could recover from her pneumonia if we put her on the breathing tube and send her to the ICU.” A chance? That sounds great! A more accurate statement might be something like this: “We could put your mother in the ICU on a breathing tube. I don’t recommend that, because she will suffer, without likely benefit. The tube is so uncomfortable she will have to be sedated, so she can’t communicate with you. She may get restrained so she doesn’t pull out the tube. If she gets through this pneumonia, she will be weaker than before, and more likely to get sick again. This pneumonia signals she is in the final phase of dementia. I recommend that you consider hospice care and a do-not-hospitalize order, focusing on comfort care without the pain and trauma of repeated transfers as she grows weaker.” A family member will have a clearer picture of how this treatment fits into the larger scenario of old age, dementia, and frailty.

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.

Like many other people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies find otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or end-stage congestive heart failure. For the patients with breast cancer, prostate cancer, or colon cancer, the researchers found no difference in survival time between those who went into hospice and those who didn’t. And curiously, for some conditions, hospice care seemed to extend survival. Those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.

Use of hospice care has been growing steadily—to the point that, by 2010, 45 percent of Americans died in hospice. More than half of them received hospice care at home, and the remainder received it in an institution, usually an inpatient hospice facility for the dying or a nursing home. These are among the highest rates in the world.

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.

This is a great time for a segue, since I’m on the topic. Who the fuck do you think watched six hundred thousand people die in the United States so far? Because I bet you no more than a few thousand of those people managed to make it home to die, with hospice or without, since we would never send someone home with active covid to infect the rest of their family. But let’s pretend maybe a hundred thousand got out—fine, that still leaves us with half a million corpses. Who held their hands, or tried to, through gloves? Who held phones and iPads up so that they could hear your last words and maybe see your face one last time? Who took care of them for hours, days, weeks, months, greeting you on the phone by name, until your loved one’s final passing? Who tried to give them dignity, in a place and time where it was sorely lacking? Who tried to show them the compassion when portions of the outside world were saying that covid—the very thing that was clotting their blood and stealing their breath—was a lie? It was us. The nurses.