End-of-Life Care Should Be Universally Provided and Need-Based

By James Hamblin, MD

Dr. Ezekiel Emanuel, oncologist and chair of the Department of Bioethics at the National Institutes of Health (and, entirely incidentally, brother to Rahm and Ari Emanuel) has long been a champion of end-of-life care. He spoke today with Corby Kummer at The Atlantic’s Washington Ideas Forum, where he made succinct points about strategies for systematic improvements in our approach to caring for those nearest to death.

First, all doctors and nurses should be formally trained in end-of-life care and discussions. Walking into a room with a patient and their family to discuss a terminal diagnosis or prognosis is — especially at first — overwhelming, and impossible to just know how to do. Emanuel admits that facing those situations remains “scary,” even as a veteran clinician. He and most of his generation of physicians never received formal training in how to best discuss terminal illness with patients and offer palliative options, and some in training today still do not. Considering the large number of people who eventually face death, it is unreasonable that not all doctors and nurses are thoroughly prepared to help them as they do.

Emanuel also cited that more than 40 percent of hospitals in the U.S. do not offer access to palliative care, either within the hospital or after a patient has been discharged home. He believes that hospitals should be required to at least offer the option.

And finally, at present, eligibility for hospice care is predicated on having six months to live. Emanuel sees access to hospice as more aptly need-based, not calendar-based. Patients with symptoms warranting palliation, regardless of the estimated length of their remaining life, should be standardly offered care in that vein.

All of these changes would come as part of an ongoing shift in psychology and broader openness about death. Emanuel is quick to add the caveat that he is not talking about euthanasia or [shudder] … “death panels.” His inclination toward explicit clarification on that point stems from accusations that he and other leaders in the realm of end-of-life care have endured in the past. The fact that he still needs to make that clarification speaks to the persistent widespread misunderstanding surrounding quality end-of-life care. That mindset is and will remain the primary barrier to seeing these improvements out.

Complete Article HERE!

End-of-life system is needed in Wisconsin

By Charles E. Cady, Joseph Hansen and Steve Hargarten

This is in response to the Oct. 17 Journal Sentinel article “End-of-life medical care initiative prompts worries about abuse.” The current status of advanced planning for end-of-life decisions is a system that is woefully lacking, and where tools exist, they are of limited utility.

Autonomy is a fundamental bioethical principle: Patients have the right to make decisions affecting their health care, including deciding on the level and type of care they want. The principle of autonomy is no more important than in end-of-life decisions.

These decisions should ultimately be made by the patient but clearly benefit from discussions with health care providers, family, religious leaders and others important in a patient’s life. These decisions should reflect the individual’s goals as guided by his or her personal values and beliefs.

The Wisconsin Medical Society’s Honoring Choices Wisconsin is in keeping with the importance of autonomy, and we fully support this. However, Physician’s Orders for Life Sustaining Treatment (POLST) also must be moved forward in Wisconsin.

As emergency medicine physicians, we have found that the current system of communicating end-of-life decisions is lacking. In practice, it is the opportunity for clear communication of a patient’s wishes at the end of life that is most challenging.

Wisconsin’s do-not-resuscitate (DNR) law is very limiting. While it is the only tool mandated to be recognized by paramedics and emergency physicians, its utility is minimal. The order is only active once a patient has lost his or her pulse (in other words, is already clinically dead) and only pertains to the withholding of CPR. It offers no assistance with regard to other care for a dying patient. Wisconsin advanced directives lack precision, are not orders that can be acted upon by a paramedic and can be very confusing in an emergency situation.

The power of attorney for health care (POAH) system is also imprecise. While this system is a very important component of end-of-life planning, it is limited in emergency situations. Following direction from POAHs is not permitted for paramedics. In an emergency situation, the POAH may also have a hard time remembering that decisions are to be based on the patient’s, not the POAH’s, wishes. Logistically, in an emergency, the POAH is often difficulty to contact.

Physician’s Orders for Life Sustaining Treatment are clear and concise orders that can (and should) be acted upon by emergency personnel. They have been successfully implemented legislatively in 15 states. They take the pressure away from a POAH to make decisions in an emergency and alleviate that sense of personal responsibility for death.

They eliminate the vagueness that is commonplace in current advance directives. They also provide for decisions about care before someone actually dies. Most important, they help plan for the last moments of a patient’s life when clarity in planning and comfort are paramount.

Along with our paramedic colleagues, we encounter patients at the end of life on a daily basis. We see that end-of-life planning is limited. When end-of-life wishes are clearly described, it is an honor to provide that care.

However, these situations are the exception rather then the rule. Consequently, our ability to follow a dying patient’s wishes is limited. The result is often prolonged, painful and futile efforts that may not be desired.

In order to avoid these painful situations and to promote discussion of end-of-life planning, we strongly support efforts to successfully implement POLST in Wisconsin.

Complete Article HERE!

UI students learn end-of-life planning with Honoring Your Wishes program

By BRIANNA JETT

Planning for death comes at the end of a life, right?

Not always —University of Iowa students in a class have begun to take a closer look at what they would want at the end of their lives in the pursuit to better understand death and how it affects all those involved.

Death and Dying — a class in the School of Social Work — is participating in a program called Honoring Your Wishes for the first time. This program is under the leadership of the Iowa City Hospice.

“In America, we have this idea of invisible death,” said Karli Jacobsen, a UI senior enrolled in the course. “Nobody really talks about it. So the whole point of the class is to get educated about the different kinds of death.”

The goal of the program is to consider what people would want if they were suddenly ill or injured and could not communicate. If the person chooses to, the end result is an advanced-care directive, a legal document in Iowa. The choices made beforehand must be followed.

“This is a way to ensure that people’s health-care preferences are honored and to also relieve family stress at a time of crisis,” said Jane Dohrmann, the director of Honoring Your Wishes.

The students in the class are only required to attend one meeting with an advanced-care planning facilitator, beginning the discussion of their future wishes. Students are also asked to think about whom they would want as their health-care agent — the person who makes the decisions when they are unable.

“You can’t cheat death,” said UI senior Victoria Castillo, a student enrolled in the course. “It’s going to happen. So you might as well be prepared for it.”

Many students take the class because they believe the knowledge they gain will help them in their future careers.

“I don’t really have very much experience with death, and with my field, I am going to come across death a lot,” Castillo said, who is majoring in social work. “I think it would be really nice to be able to have those open conversations I’ve never had before — before I have to do it with a client.”

The two students all plan on continuing the program after their required meeting is finished.

Anyone can speak at no cost with a volunteer advanced-care facilitator as long as they are 18 years old.

“I recommend this process for anyone 18 or older because we don’t know when we might have a sudden illness or injury and not be able to communicate,” Dohrmann said. “This process ensures that there is a person in place that you would want to speak on your behalf. Otherwise, it’s by default whom the medical personal might contact.”

Jacobsen said it can be hard to think about death at such a young age, but once the topic is brought up, it can be a relief.

“Starting the conversation would probably be the hardest — once you start thinking about it, it’s not as hard,” Jacobsen said. “It’s relieving for me because I know I’m putting stress off [my loved one’s] lives if this were to happen.”

Complete Article HERE!

End of life options worthy of attention

By Joe Timmerman

Death is a very difficult topic to discuss. It’s not a subject that most people enjoy pondering. It is especially difficult to discuss with someone whose death may be imminent. Like many issues, it might be easier to just avoid the topic altogether. However, as is often the case, pretending the issue doesn’t exist won’t make it go away, and can often make the end result more difficult to deal with. Thus, the news the Madison medical community will start providing end-of-life planning as a standard patient service is welcome, indeed.

End-of-life planning involves sitting down and coming up with an “advanced directive.” An advanced directive is essentially a set of written instructions regarding a patient’s preferred medical care that are carried out in the event the patient is no longer able to make those decisions. For example, a patient might specify that, if they should enter into a vegetative state, they should be taken off the ventilator and allowed to die.

Preparations for death, such as end-of-life planning, are becoming increasingly accepted in the medical community. According to guidelines published by the American Society of Clinical Oncology, all terminally ill patients should sit down and discuss their end-of-life wishes with their family and health care team.

Advanced directives are beneficial for a variety of reasons. To begin with, people should have their health care administered according to their own preferences. If someone wishes to be kept alive on a ventilator, then he or she should be able to. If someone wishes instead not to be put on a ventilator, then they shouldn’t have to be put on one against their will. Just because someone can’t communicate his or her preference doesn’t mean it shouldn’t be honored. Either way, this is utility enhancing for the patient.

As for the health care provider and the patient’s family, they aren’t forced to make life-or-death for someone else. Making these decisions are, as one might expect, extremely taxing, and everyone is better off if the patient makes his or her own decision ahead of time rather than leaving it to a third party. In a powerful Time Magazine article, Joe Klein recounts his difficult experience making these decisions for his own parents. As he writes, “I spent the next five months as a death panel for both my mother and my father.” He later writes he was “extremely fortunate” to transfer his ailing parents to a health care provider that was much more willing to candidly discuss death.

Coming up with an advanced directive also helps to keep health care costs down. CBS News reports Medicare spent $50 billion in 2009 on doctors and hospitals over the last two months of patients’ lives. The kicker? “20 to 30 percent of these medical expenditures may have had no meaningful impact.”

Over the course of one year, Medicare alone spent as much as $15 billion of treatment had no positive effect on patients’ quality of life. This is a prime example of wasteful spending that, in today’s age of fashionable austerity, needs to be eliminated. A significant portion of this spending could be eliminated if people were only kept alive as long as they wished to be.

It might seem that doing anything less than everything to extend a person’s life would be unethical. However, if the person doesn’t want to be kept alive though extraordinary measures only to suffer for longer, their wish should be honored. This can only be accomplished through people having candid discussions with their families and doctors. The fact that local health care providers are starting to encourage these discussions is good news for all Madisonians.

A push to encourage end-of-life discussions

By Kay Lazar

Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace, an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Complete Article HERE!