Hospice End Of Life Quotes

I knew then why I had to suffer. The older we get, the more reasons God gives us to seek His comfort. In the end, He sends us just enough pain and suffering so that we will want to leave. If everything were perfect, we would never choose to go. He wants us to seek an end to our suffering because He wants us to want to come Home.

A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.

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.

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.

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.

You might think sitting with someone who is dying means you will be having big conversations about the meaning of life,” a hospice chaplain had advised me. “Wrong! Sometimes, all that’s called for is to just show up and watch Jeopardy! together.

I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.

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.

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….

Of course, it’s now obvious why he was so angry that day. People don’t move into hospice to live but to die. And that half an egg sandwich I ended up making him–that sandwich was the last meal he ate in our Haight-Ashbury apartment, our one true home.

The Harley Street clientele was a collection of sad women, indeed. They were governesses who were either very sick or out of work. Most of them were unwanted by their families. It is worth noting that, in Victorian England, governesses were almost invariably well-born young ladies whose families had fallen on hard times. They worked long hours for wealthy families, often put up with abusive children, and made a pittance. It was rare for a governess to save any significant amount of money. The Harley Street home was a way station for some and an end-of-life hospice for others.

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.

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.

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

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—

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

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.

Sara: 'Nun, Gimmel, Hei & Shin'* The hospice said, ‘Sara will last one more day.’ Thus far your flame has kindled for sixty-four You are eightfold the miracle of Chanukah, your light inextinguishable, your spirit irrepressible. You are a menorah, standing arms outstretched, at the windowsill for all who raise their eyes to see, and be inspired by your light, your triumphant life that has always stared boldly in the face of death. When your wick finally flickers and sputters in protest to an end, you shall walk faithfully into Hashem’s light to become the brightest star in heaven, gleaming with pride that your flame passed on to your children, passed on to all who loved you, candle to candle. Happy Chanukah, Momeleh. I will light the Yahrzeit for you.

Hospice nursing is the purest kind of nursing you can do, and every day you are reminded that you walk on holy ground in preparing God’s children for heaven. Hospice nursing is very intimately participating in the kingdom of God that Jesus spoke about.

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.

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.

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.

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?

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.

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.

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.

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

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 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.

Elisabeth understood that life is a passage with a beginning and an end, and that it was time for humanity to face the end of life with as much awareness, dignity, and love as that accorded to birth. Bringing this truth to the world became her life mission.

We live in a fix-it society with the technology to repair many broken things at our fingertips. We forget that we’ve all been deliberately designed to “end” one day. When that ending happens, there’s nothing to fix. . . This is not giving up, or giving in. It’s acceptance.