Bowel cancer diagnosis: ‘Please stop telling me to keep fighting’

We all have a hard time finding the right words.  Here are some very helpful ideas.

"I know it’s hard to know the right thing to say, so what should you say to someone with cancer? Often a simple “I’m sorry, I don’t know what to say” is enough. We don’t need (or want) to hear that “everything will be OK” because you don’t really know that, do you? Continue to talk how you would normally talk, before cancer entered our lives, because I am still that same person you know and love. I crave non-cancer related conversation, and I still want to hear about your day, I still want to talk about normal everyday things. Try and put your words more into actions. Offer home cooked meals or freshly baked goods, drop old magazines or books on my doorstep, or offer to come to an appointment with me. Your shoulder to cry on, your listening ears, your mere presence is enough. Let me be angry with the world, agree with me when I say that life is cruel and unfair. The best thing that you can do, is to simply be present. Whether it’s phone calls, text messages or visits, knowing that you are still by my side is the best thing I could ever hope for."

Bowel cancer diagnosis: ‘Please stop telling me to keep fighting’

The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs

"The traditional view is, while we are not to shorten life...we arenot to prolong death."

How a dying patient (goses) should be cared for in the last hours of life 

What are the duties of a Shomer The Jewish ritual of Tahara (washing of the dead) 

The role of a Chevra Kadisha  

Why a traditional Jewish funeral should be relatively inexpensive 

Jewish burial customs 

The mourning ritual (Shiva) for Jewish families 

The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs

When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’ - The New York Times

The loss of a pet is often a child’s first experience with death. Understanding the unique ways that children view pets and respond to their passing can help parents to ease the grieving process. 

Joshua Russell, an assistant professor of environmental science at Canisius College in Buffalo, who has studied the effects of pet loss in children, explained that for many children, pets are more than just animals. “Many kids describe their pets as siblings or best friends with whom they have strong connections,” he said. 

In a study of 12 children ages 6 to 13 who had lost a pet, published in the journal Environmental Education Research, Dr. Russell found that even years after the pet’s death, some children still described the loss as “the worst day of their lives.” He also discovered that children come up with unique ways to rationalize their pet’s passing and that the way a pet dies influences how children grieve. “Children, in particular, have a distinct sense of existential fairness around whether or not an animal lived until an appropriate age,” Dr. Russell said.

When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’ - The New York Times

The Symptoms of Dying - The New York Times

A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens. Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented. 

There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual. People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.

The Symptoms of Dying - The New York Times

The parenting lessons I learned from my dying child - The Washington Post

Jennifer Golden writes about telling her young daughter that her little brother is is dying. <P><P>"Answering the question that is asked is the first step. The tougher part is fighting the urge to elaborate on that answer once delivered. I think of it as a “full-stop” approach, requiring disciplined conclusiveness: Listen to the question; answer that question and that question only; full stop; wait for the next question. The strategy has enabled me to break down complicated, weighty issues into “bite-sized” pieces that are more manageable for a kid’s developing brain to process. It gives the child time to digest the information she has heard and come back for more when she is ready. I have been surprised by the number of times Hannah has returned to a conversation out of the blue hours or even days later. I have benefited, too.  This technique enables me to give my kids answers without sharing my emotional baggage. Some of our conversations are fraught with emotional triggers, particularly when my girls have questions about their brother. But answering them directly and honestly and then waiting, sometimes with gritted teeth, for their next one forces me to follow my child’s lead instead of going down the rabbit hole of my own grief."

The parenting lessons I learned from my dying child - The Washington Post

This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide | The Amateur's Guide To Death & Dying

University of Virginia nursing professor Cathy Campbell talks about how end of life care is improving:

There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.” 

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.” 

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – 

What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress. Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide | The Amateur's Guide To Death & Dying:

“How long have I got, Doc?” Why many cancer patients don’t have answers - Salon.com

Some patients approaching the end of life are in denial, assuming that they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic estimate of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine. In a study published last year in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy. 

And in a 2012 study in The New England Journal of Medicine, 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer thought they could still be cured, although both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.  

Such misunderstandings can have profound consequences for patients and their caregivers. Patients who don’t understand how long they have to live often choose overly aggressive therapy that can cause pointless pain and suffering. Nearly one-third of cancer patients end up in the intensive care unit, or ICU, in the last month of life, according to the Dartmouth Atlas of Health Care. Although intensive care can save the lives of younger, healthier people, it doesn’t improve or lengthen the lives of people with terminal cancer.  

“It’s surprising how many people end up in an ICU, critically ill and dying, without realizing they’re dying,” said Dr. Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine. These last-ditch measures to extend life can leave families with extended grief and trauma, Siegel said.  

Although almost half of Americans use hospice care — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only a week before death. “The real question is, ‘How do these patients become overly optimistic about their prognosis and what part do physicians play in this?’” Siegel said. “What do physicians tell the patients? What are patients hearing?”"

“How long have I got, Doc?” Why many cancer patients don’t have answers - Salon.com