End-of-Life Choice, Palliative Care and Counseling

Posts Taggedadvance directives

Boomers Want Control of Their End-of-Life Care

By Jonathan Walters
September 28, 2012

Assisted suicide. Euthanasia. Death panels. Rationed health care.

There’s nothing like a well-chosen phrase to inflame talk about end-of-life care — how the health-care system cares for those who are in the last stages of a terminal illness and how much control patients and their families have over that process.

It can be an emotional and divisive issue, and for lawmakers, a dangerous business. That’s certainly something President Obama quickly learned when a provision in the Affordable Care Act (ACA) that encouraged doctors to engage patients in discussions about end-of-life care quickly deteriorated into a nationwide war of words over whether such one-on-one discussions between patient and physician would result in “death panels” determining who should receive care.

But with America rapidly aging, the subject of end-of-life care isn’t going to go away. It has the attention of any legislator or government official trying to make sense of health-care budgets in general and Medicare expenditures in particular. That’s because in their last year of life, older adults consume more than a quarter of Medicare’s expenditures, costing more than six times as much as other beneficiaries. It also has the attention of hospital officials. Under the ACA, hospitals will be penalized by Medicare for high readmission rates. That means there will be more focus on avoiding the ping-ponging of terminally ill patients that often takes place between nursing homes and hospitals as people near the end of their lives.

Meanwhile, an increasing percentage of Americans say they want more control over how they will be treated should they become terminally ill. Faced with the mechanistic environment of hospital intensive care units, many older patients say they prefer to die at home, surrounded not by machines but by their family. Others want every option explored, every high-tech trick tried to prolong their lives, even if they are unconscious.

Today, the discussion over end-of-life care is alive and well — but not on a national level. “It’s pretty quiet right now, and has been since 2009 and the whole death panel debate,” says John Carney, president and CEO of the Center for Practical Bioethics, formed in 1984 to parse out complicated ethical issues around medicine and medical research, including issues like end-of-life care. Rather, the debate and press toward a political solution are currently taking place at the state level. There, policymakers and advocacy groups are managing to defuse the raw emotional responses that national, partisan-fueled battles elicited when the ACA was being debated.

The reason for that is straightforward. Rather than pursuing the “death with dignity” approach to end-of-life decisions — which immediately inflames the right-to-life lobby — a low-key movement has evolved in the states. This movement is focused on giving patients facing tough decisions about end-of-life care more say in what medicine and medical procedures they want or don’t want.

If advocates for more rational and patient-centered end-of-life care can avoid the specter of death panels and health-care rationing, there’s the real possibility of progress. Dr. Susan Tolle, who practices general medicine in Oregon and serves as director of the Center for Ethics in Health Care at the Oregon Health & Sciences University (OHSU), says, “When people are using language like ‘death panels,’ there’s more emotion and fear than if you say you want to honor the wishes of this individual.” More

Campaign Aims to Spur End-of-Life Conversations Within Families

By Kay Lazar
The Boston Globe
August 29, 2012

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. More

An Interview with Judy Epstein

By Liz Matsushita
July 28, 2012

Dr. Judy Neall Epstein is a naturopathic physician and the Clinical Director of the Compassion & Choices End-of-Life Consultation Program. Dr. Epstein spent ten years in private practice before accepting her position at Compassion & Choices, where she works with counselors and clinical coordinators to advocate for the terminally ill and provide education and support for end-of-life planning. We spoke with Dr. Epstein about advance directives, as well as the POLST, a form that people are finding increasingly useful in end-of-life planning.

Liz: To start off, let’s discuss advance directives. What is an advance directive, and what different types of advance directives are currently available?

Judy: “Advance directive” is really a generic term for a couple of different things. The term generally includes a living will, which is a written statement of preferences, and a durable power of attorney for health care or a health care proxy assignment. Those two parts combined are an advance directive. There are many different kinds, and different states have different laws, and different states honor certain kinds of statements, and so it’s actually very state-specific. But there are general things shared by all the variations, like “would you want a ventilator if you couldn’t breathe on your own?” and things like that.

Our website has all of the individual states and the advance directives specific to that state, which is important to know. You can buy a general advance directive form at a stationery store, and there are generic forms that attorneys will use when people are estate planning. But I think it’s nice to know that there are state-specific forms available, which can make sure wishes are honored in each individual state.


Liz: What are some of the specific differences between state forms, and how can one navigate these differences, if, for example, one travels between states?

Judy: I couldn’t say all the specifics, but for example there are some states that presume that a person would want artificial food and hydration if they couldn’t swallow on their own, and they will just insert a feeding tube regardless of what an advance directive says. It’s not in their state-specific form, though it probably would be in a generic form. So there’s funny little things like that: if you wanted that in your state-specific form, you would need to say “in the event I could no longer swallow on my own, I would not want a feeding tube.”

The thing that’s interesting is, advance directives are really only usable when they’re available during emergency healthcare situations. So the piece that is important, I think even more than writing down and filling out a form, is making sure someone knows exactly what you want and don’t want. We really talk to people a lot about this: fill out the form, but sit down with the person who’s your proxy and all your family members and go through it step by step. “In the event of this, I do want this,” etc., because they are the ones who are going to be making the decisions.

Let’s say you have a California advance directive and you’re in Oregon, and you end up in the hospital; if your partner or child is there with you, they can speak up for you while someone finds that advance directive in California and sends it over. Medical professionals will listen to the family and medical proxy in lieu of an advance directive.

Liz: Now, I want to turn our discussion to the POLST. Is the POLST considered an advance directive?

Judy: It’s in a different category. A POLST stands for “Physicians Orders for Life-Sustaining Treatment.” It’s a form that is signed by your physician, agreeing to and stating your preference for what you want to happen. It’s often used as a Do-Not-Resuscitate form, but it goes a little bit further than the DNR.

People generally keep them in their house—it’s really only meant for people who are quite elderly and frail or very sick or have a terminal illness, people who are in a situation in which they could very easily have an event that lands them in the hospital. Often, when people are that ill, they don’t want to be resuscitated; if they are at home and have that fatal heart attack, they don’t want emergency personnel to be called in to resuscitate them.

Emergency personnel will always look for the POLST on the back of the front door or on the refrigerator if they do indeed get called. Unfortunately, the law doesn’t hold them to it; but at least it makes it clear what a person wants, and makes the odds of having that followed much more likely because it is stated and signed by a physician.

Emergency personnel in particular often feel they have to do whatever they can if they are called. So we often advise people who have a POLST in place that states “do not resuscitate” to advise family members not to call 911! If emergency personnel come, they’ll be compelled to do something, probably from a liability standpoint.

So basically, a POLST is different in that it is signed by a physician, and signed by the person themselves. It doesn’t replace an advance directive, but it is a supplement.

Liz: What are the advantages to having a POLST over advance directives? Is it advisable to have both?

Judy: Sure, yeah. The forms work in tandem with each other sometimes. But if someone is really very ill or frail or terminal, a POLST will answer immediate questions about what’s really going to save them or not, and having a doctor sign off on a POLST gives the document a lot more weight in the eyes of other medical professionals.

Another thing about advance directives that varies between states is that some states require that a notary public signs the document in addition to you. Other states require witnesses only, while others will honor or acknowledge an advance directive that’s only signed by the patient themselves. But because the advance directive is only signed by these people, whereas the POLST is signed by the physician, this gives it more weight. People see it as a sign that coercion was less likely, and that it’s probably pretty likely that the person really wanted that and asked for that.


Liz: Are there differences between states in how the POLST is administered and dealt with? Again, how can one navigate these differences?

Judy: It’s much more straightforward than the advance directive: it’s a 1-page document, whereas an advance directive is an 8- or 9-page document, so there’s a lot less room for confusion on a POLST. It generally just talks about resuscitation options and antibiotic use and artificial fluids and nutrition. So there’s not as much variation. The thing that’s interesting is, in many states they don’t even have a POLST program. But some states, like Oregon, have a POLST registry: once a physician has filled out a POLST on one of their patients, it goes into the state registry, so no matter where you are, in any hospital or medical facility, they can look up and see what the POLST orders are.

There’s really quite a movement right now to get other states to adopt that kind of thing. There’s actually a great website where people can look up their state, run by the Oregon Health Sciences University bioethics department.

In states where there is no POLST program, we tell people you can still fill one out or try to get your doctor fill one out, but you must know that medical personnel don’t know to look for it. That’s when it would be especially important to have an advance directive in place, because those are known nation-wide and every state has one. The POLST is a more recent development of the last decade or so. So if people want one, and the state doesn’t have one, they can go to this website and educate their physicians and say, I’d like for you to do this.

But the good news is, an advance directive will kind of kick in behind a POLST, and still be there, so you will still have something in place and will not be a total victim to circumstance.

Liz: Finally, what advice do you have for our readers regarding end-of-life planning, and navigating the advance directive and POLST process?

Judy: Fill out the forms—everyone over 18 should do it. People don’t just die from sickness and being old; they die from car accidents and bike accidents and ski accidents and everything else.

And I’ll say it again: I would definitely first find out what is the story in your state of residence through the OSHU website or through our website, but most important is having the conversation. Because if it’s in writing, that’s great, but you should still sit down with your family and review what’s in writing. Otherwise, if you end up in the hospital with some kind of critical event, people get really upset. It’s a very emotional and stressful time. And if they haven’t heard in your words that you don’t want to be on a ventilator and don’t want artificial food and water, but only look at the form and see the box checked, they might think, “Really? I didn’t know! Why would they not want it? They might come out of this in two years!” And because of the emotional attachment, they might not be able to say, follow this order, I’m sure that’s what they wanted.

But if the conversation has been had, and everyone has talked about it, then as a family we can say we know they didn’t want a ventilator, it’s very clear on their forms, and we need to honor that wish. Even though they are in a very vulnerable situation and speaking for you, they can do that much more confidently and guilt-free if they’ve had that conversation. So my advice would be, have that conversation. Everyone should fill out the forms, and everyone should talk to their families.

What Makes the End-of-Life Experience Peaceful?

By Jenifer Goodwin
US News
July 9, 2012

Dying patients face their final days better if they are not in the hospital, not on a feeding tube or chemotherapy and feel that they have a trusting relationship with their doctor, a new survey of terminally ill cancer patients reveals.

Other factors that helped them find peace in the end, the survey showed, were prayer, meditation, a pastor’s visit and freedom from excessive worry or anxiety.

The survey involved about 400 U.S. patients with advanced cancer who were told they had less than six months to live, and their closest caregiver, usually a spouse. The cancer patients, whose average age was 59, were surveyed an average of four months before they died. Their caregivers were then surveyed about the end-of-life experience.

Several factors determined how the patients and their caregivers rated their quality of life at the end. Among the most important: not dying in the intensive care unit or hospital; not having to endure aggressive, life-prolonging treatments at the end, such as feeding tubes or chemotherapy; and feeling their doctor saw them as a whole person and treated them with respect, said lead study author Holly Prigerson, director of the Center for Psychosocial Epidemiology and Outcomes Research at Dana-Farber Cancer Institute in Boston.

“What the results suggest is that attention to patients’ psychosocial needs, their spiritual needs, their comfort, their worries, their need to not be abandoned by their health care team and to feel valuable and significant are the things that matter most to the patients and their families,” Prigerson added.

“It’s not . . . how much chemo or what procedures are performed or heroics. In fact, it’s the opposite. It’s the human connection that seemed to be the most important [for] good quality of end-of-life care,” she said.

The research was published online July 9 in the Archives of Internal Medicine.

Oncologists tend to focus on curing patients, but many are less comfortable dealing with end-of-life issues, the experts said. The findings show that even when a cure is no longer possible, patients still want to know their doctors care.

“When patients aren’t curable anymore, a lot of physicians feel there is very little they have to offer their patients, but what these results suggest is the opposite,” Prigerson said. “In fact, physicians are one of the most important influences on the quality of life of their patients — by being there, being emotional available, being present and not emotionally abandoning someone because you can’t cure them of their cancer.”

Alan Zonderman, a senior investigator at the U.S. National Institute on Aging, said the study is important because it includes actual data, rather than anecdotes, about what matters to patients and their families at the end of life.

“It means that we can give physicians some real guidance based on some genuine evidence from patients and people who are truly close to the patient,” said Zonderman, who was the co-author of an accompanying editorial in the journal.

The findings also illustrate how important it is for physicians who treat cancer patients to be able to “shift gears” and focus on the quality of a patient’s last days when a cure is no longer possible, said Dr. Michele Evans, senior scientist and deputy scientific director at the U.S. National Institute on Aging.

Having that conversation isn’t easy, Evans added. “We’re good at telling patients: ‘The nausea, the hair loss, the vomiting, it’s worth it, because we are going to get you to a cure,’” Evans said. “But in the course of some diseases, we are not going to get there.”

That’s when it’s important for physicians to have a strong, open relationship with patients, to be able to tell them the truth, and to be there going forward, she added.

Another key finding was the importance patients placed on “choosing where they were going to die and how they would spend the last time available to them,” Evans said.

“There is no way to make an [intensive care unit] a pleasant environment,” Evans said. If cancer patients are spending their last days there, “it often means the care has gotten out of control, and is no longer based on quality of life. It’s preservation of life at the cost of quality of life,” she added.

To make sure those end-of-life needs are met, experts say cancer patients should have documents such as advance directives, living wills and durable power of attorney for health care, which appoints someone to make health care decisions should you no longer be able to.

But equally as important, Evans said, is for cancer patients to make sure they discuss their wishes with their family and their physicians.

“It first has to start with a conversation with your immediate family, and you have to understand the dynamics of your family, so that when you may be too ill to make decisions, that they understand how you would like things to be done,” Evans said.

“So many times, we never had that conversation. Families will say, ‘We don’t know what to do, just treat him. He’s a fighter.’ This person in life may be a fighter. But what happens if we are going to lose the fight? Do you want to go down fighting, or do you want to have time to feel not so bad and to have us focus on the quality of your life?” Evans continued. “We as Americans, we don’t have that conversation frequently enough, and we don’t have it with our physicians.”

Let’s Stop Paying for Unwanted Treatment at Life’s End

In 2002, an elderly client of Compassion & Choices, Margaret Furlong, went to the hospital armed with her advance directive, clearly stating she did not want elaborate, life-extending treatment.

The hospital delivered those treatments anyway. She spent ten miserable days in the ICU, tethered to machines and tubes and pleading for it all to stop. Finally it did, and Margaret died. Then the hospital billed Medicare for all her unwanted treatment and Medicare paid – without objection, with our taxpayer dollars.

Margaret’s story is far too common. At Compassion & Choices we intend to put teeth into advance directives, and we need your help.

It is well documented that although advance directives are offered and included in the medical chart – as the law requires – in the end they are usually ignored. The pattern is cruel and absurd, and even the medical profession is starting to understand that. Last year the Archives of Internal Medicine reported, “Persons dying in the hospital often receive burdensome care immediately before death that may not match patient preferences.”

Aggressive medical interventions in the setting of terminal illness do not prolong life, but they do increase the suffering of patients and their loved ones. Sadly, Medicare, Medicaid and private insurance carriers incentivize healthcare providers by paying for unnecessary and unwanted treatments.

This could end if public and private health payers required, as a condition of payment, that treatment in the weeks prior to death conform to the patient’s advance directive.

Here is one way you can help. Tell us if you know of a situation where a doctor or hospital disregarded a person’s explicit instructions or the instructions of a surrogate decision-maker. Your stories will help drive that point home with health insurers, hospitals, and health care providers.

As soon as providers realize the costly, unnecessary and painful procedures, tests and treatments they contemplate for a dying patient may be at their own expense, advance directives will acquire unprecedented power and authority. When providers choose treatment based on what patients want, we will have achieved real progress in shielding people near the end of life from the type of suffering Margaret Furlong endured.