dying | Our Better Health

By Dennis Thompson HealthDay Reporter

FRIDAY, Oct. 9, 2015 (HealthDay News) — The choice to die at home, rather than in a hospital, provides great comfort to both the patient and their loved ones, a new British study says.

People who die at home experience more peace in their final days and hours than they would in a hospital, with no greater pain, according to findings published Oct. 8 in the journal BMC Medicine.

Further, their relatives experience less grief in the months following their passing, said lead author Barbara Gomes, a research fellow at King’s College London.

“Dying at home happened more peacefully, and in no greater pain, than in the hospital,” Gomes said. “This could bring some comfort and help people deal with what is a very difficult time for someone who has recently lost a friend or relative to cancer.”

But the researchers also identified a set of factors that must be in place for a person to be able to die at home.

Both the patient and their relatives must be on board with the decision, the study showed. The patient also needs to have access to palliative care and nursing support in the home during their last three months of life.

These factors “are almost essential,” Gomes said. “They were present in more than 91 percent of home deaths.”

The new study involved 352 bereaved relatives of London cancer patients, 177 of whom died in a hospital and 175 who died at home. The relatives filled out questionnaires that measured the patient’s pain and peace in the last week of life, and the relative’s own intensity of grief.

The researchers found that about 25 percent of patients who died in a hospital experienced little to no peace in the last week of their lives. By comparison, only 12 percent of patients dying at home were unable to find any peace.

Being at home during one’s final days can help a person take solace in the life they lived, said Don Schumacher, president and CEO of the National Hospice and Palliative Care Organization, based in Alexandria, Va.

“The smells, the familiarity, the comfort, the love, the things they’ve helped to create, the garden they’ve built — all of this is around them,” Schumacher said. “It creates such a sense of accomplishment and nurturing and caring.”

The study also found that relatives reported that people who died at home experienced no more pain than those who died receiving hospital care.

“Many people with cancer justifiably fear pain,” Gomes said. “So, it is encouraging that we observed patients dying at home did not experience greater pain than those in hospitals, where access to pain-relieving drugs may be more plentiful.”

Dying at home also appeared to help the people left behind. Relatives reported less intense grief when the patient died at home, even months following their death.

Bereaved relatives might receive some comfort from the fact that the patient died more peacefully, Gomes said. They also may have been able to spend more time with the person in a familiar setting, helping them achieve a sense of closure.

However, dying at home requires that the patient clearly express the desire to do so, and often requires relatives to support that decision, the study found.

That means people need to have end-of-life discussions sooner rather than later with loved ones, and make their wishes clear, Schumacher said.

“Don’t wait too long to have these conversations,” he said. “There’s nothing worse than waiting until you’re in crisis, because then it’s so easy to misinterpret things.”

People also were more likely to die at home if their relatives had accepted the fact that their condition was terminal, the researchers found.

Health care professionals who are skilled in end-of-life care can help facilitate these discussions, Gomes said. They also can make sure that the topic is revisited regularly, as a person might change his or her mind or the medical situation might require that the plan be altered.

The patient also needs strong hospice support to die at home, according to the findings, and that means people living in some areas will be more apt to have their wishes obeyed.

People in the United Kingdom, the United States and Canada appear to have sufficient access to hospice care to allow them the option of dying at home, the researchers said in background information, while people in Japan, Germany, Greece and Portugal often die in a hospital because there’s less support for hospice.

“The reality may be different in other regions, particularly in those where access to home palliative care teams — specialists in controlling pain and any other challenging symptoms in the community setting — is patchy,” Gomes said.

source: news.health.com

Our final days are not like theirs. But they should be.

By Ken Murray, MD from zocalopublicsquare.org

Also published in Reader’s Digest Magazine July 2014

YEARS AGO, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. The diagnosis was pancreatic cancer. His surgeon was one of the best: He had even invented a new procedure for this exact cancer that could triple the five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life.

Charlie was uninterested. He focused on spending time with family. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him. Several months later, he died at home.

Doctors die, of course—but not like the rest of us. What’s unusual is not how much treatment they get compared with most Americans but how little. They have seen what is going to happen, and they generally have access to any medical care they could want. But doctors prefer to go gently.

They know enough about death to understand what all people fear most: dying in pain and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen. They know modern medicine’s limits. Almost all medical professionals have seen “futile care” performed. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs.

All of this occurs in the intensive care unit at a cost of tens of thousands of dollars a day. It buys misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” Some medical personnel wear medallions stamped NO CODE to tell physicians not to perform CPR on them.

The Drawbacks of “Do Everything”

How has it come to this—that doctors administer care that they wouldn’t want for themselves? The simple, or not-so-simple, answer: patients, doctors, and the system.

Imagine that someone has lost consciousness and been admitted to an emergency room. When doctors ask family members—shocked, scared, and overwhelmed—if they want “everything” to be done, they answer yes. But often they just mean “everything that’s reasonable.” They may not know what’s reasonable, nor, in their confusion and sorrow, will they ask or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether reasonable or not.

People also have unrealistic expectations of what doctors can accomplish. Many think of CPR as a reliable lifesaver, when the results are usually poor. I’ve seen hundreds of people in the emergency room after they got CPR. Just one, a healthy man with no heart troubles, walked out of the hospital. Even though only a small percentage of healthy people will have a good response to CPR, we would always do it to give them that chance. But with terminal people, virtually no one responds. If a patient has severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal and the odds of suffering are overwhelming (see sidebar).

Physicians enable too. Even those who hate to administer futile care must address the wishes of patients and families. Imagine an emergency room with grieving, possibly hysterical, family members. Establishing trust under such circumstances is delicate. People may think a doctor is trying to save time, money, or effort—rather than attempting to relieve suffering—if he advises against further treatment.

Even when the right preparations have been made, the system can still swallow people. One of my patients was a 78-year-old named Jack; he had been ill for years and had undergone about 15 major surgeries. He explained to me that he never, under any circumstances, wanted to be placed on life support. One Saturday, Jack suffered a massive stroke and was admitted to the emergency room unconscious. Doctors did everything possible to resuscitate him, and they put him on life support. This was Jack’s worst nightmare. When I arrived and took over his care, I spoke to his wife and to hospital staff, bringing in my office notes with his preferences. Then I turned off the life-support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped; the system had intervened. A nurse, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying. I could far more easily have left Jack on life support against his wishes, prolonging his suffering. I would even have made a little more money, and Medicare could have ended up with an additional $500,000 bill.

Choosing Quality of Life

Doctors don’t overtreat themselves. Almost anyone can die in peace at home. Pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity, offers most people better final days. Studies have found that people in hospice often live longer than people with the same disease who seek active cures.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had spread to his brain. With aggressive treatment, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Torch decided against treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months having fun like we hadn’t had in decades. We went to Disneyland, his first time. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He had no serious pain and remained high-spirited. One day, he didn’t wake up; he spent the next three days in a coma-like sleep, then died.

Torch was no doctor, but he wanted a life of quality, not just quantity. If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. There will be no heroics; I hope to go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Ken Murray, MD, is a retired clinical assistant professor of family medicine at the University of Southern California.

source: Readers Digest