End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Archive for October, 2011

POLST: A Path to Dignity at the End of Life

By Kate O’Malley of the California Healthcare Foundation
for Health Agenda, the blog of the John A. Hartford Foundation
Thursday, October 21, 2010

Record numbers of people are crossing the threshold into old age, and many are living well into their 80s and 90s.  New medical procedures and drugs become available every day, and quality of care and of life in the weeks and months before death is becoming a more common topic in professional and popular literature. Questions abound related to the use of invasive technology to extend life when the burden of treatment is great, and whether it is appropriate to “do something ” just because something can be done.

While physicians, lawyers and ethicists express varied points of view, the voice most needed is sometimes the least heard–that of the individual. What happens when a patient’s wishes are not known and he is unable to participate in making decisions? The default response is too often to use everything the system has to offer: intensive care, aggressive surgical procedures, medications, and life-sustaining support. It’s a costly policy in both dollars and human resources. And it may well be exactly the opposite of what the patient would have wanted. So how do we avoid the default response?

The answer, of course, is to ask the sick, frail, or older person—while still conscious and lucid—what sort of treatment he or she might want near life’s end. This seems simple at first consideration, but can often be difficult. Many physicians and health providers are simply not comfortable or skilled in initiating these conversations.  And even if you get cogent answers, what sort of legal weight do they bear?  How do you write down the answers and make sure that they get to the next person?  Should a patient declare he or she wants a DNR (a do-not-resuscitate order), can a hospital, physician, or nurse be sued by family members for following the order? And how can you guarantee that wishes would be followed?

In eleven states, the answer is the Physician Orders for Life-Sustaining Treatment (POLST) paradigm, developed in Oregon in 1991. The POLST mission is to ensure that a seriously ill person’s wishes regarding life-sustaining treatments are known, communicated, and honored across all health care settings. That means helping the patient communicate his or her wishes effectively, documenting the resulting medical orders on a bright pink, easily recognized form signed by the primary care physician, and getting a promise from health care professionals to honor these wishes.

POLST is an excellent tool for patients and families. It engages the individual in the decision-making process and, when used with an advance directive that names a proxy health-care decision maker, it helps ensure that care is provided based on the wishes of the person, including limiting care like intensive care unit stays or intubation.  This protects against pointless suffering, and allows patients to know their wishes will be honored, even if they can’t personally enforce them. It also helps both patients and their families navigate the uncomfortable waters of talking about end-of-life care and developing their POLST document.

In my state, California, the California Health Care Foundation (CHCF) first provided $120,000 in grants to several communities to establish POLST programs.  Based on their initial success,  CHCF has made a series of investments through 2013 of over $3 million to spread POLST throughout California.  The Coalition for Compassionate Care of California administers the funds. Since January 2009, California law has required that POLST be honored across all settings of care and gives legal immunity to providers who honor a POLST document in good faith.

Initially, our outreach and funding efforts have focused on patients in nursing homes. Too often, nursing home patients are shuttled back and forth to the hospital with every downturn in their health; once hospitalized, they may receive  a full range of uncomfortable, even painful, tests and procedures. Very few nursing home patients want this, but their wishes are not know and honored. With POLST, patients and families can elect to curtail hospital trips, as well as instruct the hospital to use only limited interventions.

Impending death is an unpleasant subject, but it’s a part of life we can’t afford to ignore or deny, especially if we wish to give the people we love the gifts of respect and dignity that every human being deserves. So far, 11 states have fully adopted POLST, with an additional 20 states developing programs. But that still leaves 19 to go.

John Kroger Defends Oregon’s Death with Dignity Law

By: Diane Lund-Muzikant
October 27, 2011

The Supreme Court decision upholding Oregon’s death with dignity law must remain intact, said Attorney General John Kroger who appeared at the annual luncheon held by Compassion & Choices on Tuesday.

“All of us in our society would be better off if our government doesn’t try to dictate that choice to us, but instead leaves it up to us and our families as to how we’re going to end our lives,” he said.

Kroger related a story about his grandmother who, at age 15, walked from her home in Czechoslovakia to France where she boarded a ship headed to New York. She arrived in Ellis Island in 1919 just as the New York Times was doing an article on recent immigrants and appeared in the newspaper dressed in peasant garb, her guitar in hand.

“My grandmother was a remarkable woman; she was fierce in her determination to get a better life for her family,” he said.

Every day she and his grandfather tucked money away; they saved their entire lives – buying General Motors stock in the 1930s. Years later, when his grandfather died, she was a rich woman.

When told by her family that she could now buy anything she wanted for herself, Kroger still remembers her response. “She thought about it and said, ‘mini blinds’ – to her that was a luxury item.”

But she wasn’t offered such a choice when her life came to an end, and spent her last months in a hospital on every possible machine imaginable.

“A lot of her life had been stripped away from her, and I remember spending time with her and from the look in her eyes, I knew that’s not what she wanted,” Kroger said. “My grandmother was in deep pain had really no opportunity to leave her life the way she had led it.

“We’ve lost what death and dying means to us as human beings. How do you leave this life matters a lot. It matters to human dignity; it matters to your family, to who survives you. And, it’s part and parcel of the subject called death. We seem to have really lost our way in our society in dealing with these issues.”

Such a conversation, Kroger said, needs to happen on a national level, but people are fearful of talking about death and dying.

“It’s been something not to discuss,” he said. “We want to deal with the medical problem where – no matter what — we bring all of our tools to our last dying breath.”

At some point, the key votes for the Gonzales decision are going to leave the Supreme Court which could throw the future of Oregon’s law into question.

Kroger’s confident that whoever succeeds him as attorney general will fight hard to defend this law.

“We need to give people the opportunity to end their lives with spirit and control and dignity, my grandmother didn’t have the opportunity to make that choice,” he concluded.

To learn more about Compassion & Choices and the Gonzales decision, click here.

Retired Doctor Tests Aid-in-Dying Law in Hawaii

ABC News
Oct. 17, 2011

Jeri Orfali was a top software executive in the early days of Silicon Valley, author of several books and even professionally courted by Steve Jobs until, like Jobs, she was struck down with cancer at the age of 56.

“You don’t think about how someone dies from cancer,” said her husband of 30 years, Robert Orfali. “No one tells you what really happens. It took me by surprise, everything.”

The Orfalis settled in Hawaii, where his wife was eventually diagnosed with ovarian cancer and died in 2009. In her final days, she bore excruciating pain that was not helped by palliative care.

“In the end I could see tumors coming out of her legs and in her neck,” he said. “Her legs were swollen and her stomach was so bloated, the cancer almost burst out of her. She couldn’t get her next breath.”

There is no dignity in dying, according to Orfali, who was so horrified by his wife’s suffering that he wrote two books on the topic and has pushed to see Hawaii be the fourth state to legalize physician-assisted death.

And now, experts working with the national group, Compassion and Choices, and the Hawai’i Death With Dignity Society, have unearthed a 102-year-old provision in Hawaiian law that they say means aid in dying has been legal all along:

[W]hen a duly licensed physician or osteopathic physician pronounces a person affected with any disease hopeless and beyond recovery and gives a written certificate to that effect to the person affected or the person’s attendant, nothing herein shall forbid any person from giving or furnishing any remedial agent or measure when so requested by or on behalf of the affected person.”

Advocates say the provision was added in 1909 to give dying patients the option to get treatment that may not have been approved by the government. It likely arose out of now- canonized Father Damien’s missionary work on the Island of Molokai with those who suffered from leprosy.

Some retired doctors now say they are poised to go ahead and help those who seek aid in dying, provided they meet guidelines established by a law in Oregon, where doctors have been legally allowed to end a terminal patient’s suffering since 1997.

Since then, Washington and Montana have also legalized aid in dying.

“I think there is very little risk on my part if I did that,” said Dr. Robert “Nate” Nathanson, 77, a retired general practitioner from Oahu, who said he has kept his medical license current so he could test the existing law. “If you qualify and your own doctor won’t do it, I would be willing.”

Nathanson and Orfali were part of a recent forum on that legal provision and have been advocates for what they call “death with dignity.”

Advocates say that just having the lethal pills gives terminally ill patients peace of mind that they can control their lives and their death.

“I like the term ‘death with dignity’ — it is much better than physician-assisted suicide, which conjures up a person who is depressed and kills themselves,” said Nathanson.

Their loudest critics — right-to-life groups, the Catholic Church and those who represent the disabled — say Compassion and Choices, a national group that grew out of the former Hemlock Society, is spreading “misinformation.”

“Oops, they did it again,” responded the president of the Aloha Life Advocates, Karen DiCostanzo, in the Hawaii Reporter.

The advocacy group claims what they call “physician-assisted suicide” would be a “recipe for elder abuse.”

“The ‘panel’ consisted solely of suicide activists, so this was not a bona fide effort to air opinions from both sides and maintain balance,” DiCostanzo wrote. “Rather, this was meant as a PR stunt to create a news story and arouse public interest in their cause.”

She contends that the 1909 provision was written to allow doctors to give patients nontraditional remedies for illnesses such as Hansen’s disease (leprosy), tuberculosis and asthma.

Though she assails their argument as “weak,” DiCostanzo urges Hawaiians to “act now” to prevent Hawaii from going the route of three other states that give a physician the freedom to prescribe fatal medication to mentally competent patients who are terminally ill without fear of prosecution.

The Catholic Church was one of the groups that derailed an effort in 2002 to legalize assisted death in Hawaii. The bill, which had been introduced by Democratic then-Gov. Benjamin Cayetano and passed the state House of Representatives, was defeated 14-11 vote in the state Senate.

“What strikes me as so ironic about the movement for physician-assisted suicide — is that it is portrayed as a movement to affirm individual freedom and autonomy,” said the Bishop of Honolulu Clarence (Larry) Silva in an email to ABCNews.com. “However, the fact of the matter is that people have been committing suicide quite autonomously for millennia, without the help of physicians.

“The fact that the proposed laws require informed consent before a lethal dose can be prescribed indicates to me that in the depths of their hearts people know that suicide is wrong,” he said. “They seem to want a way to convince themselves that it is acceptable by having a ‘higher authority’ authorize it.”

He said suicide is “always a tragedy” and hurts family and friends who are “left behind,” leaving them with grief and “lasting guilt.”

But advocates for aid in dying say that end-of-life care is sometimes inadequate.

Orfali, who described his devotion to his wife as “love on steroids,” said her last days were agonizing when morphine and two other standard medications were unable to alleviate her pain.

She had been a champion surfer in her age class throughout chemotherapy, but in the end, “nothing worked,” even with the palliative care of hospice, he said.

Hospice care varies, according to Nathanson, who was one of the founders of two hospices in Hawaii. “They belong to a national association, but they make their own rules.”

Some allow “terminal sedation” — that is, giving an intravenous cocktail of drugs that depress respiration and hasten death — but others do not.

But terminal sedation is under a doctor’s control, according to Nathanson, and “the patient has no say in it.”

Critics of Oregon’s law have used the “slippery slope” argument that “people would come from miles around to get medicine and we would be bumping off the elderly and the poor,” he said, but that never materialized.

According to a report from the Oregon Department of Human Services, 95 prescriptions for lethal medications were written in 2010, compared to 88 during the previous year. Of those, 59 patients took the medications.

“There is also an incredible paradox here,” said Nathanson. “The people you end up writing a prescription for may end up living longer than expected. … They didn’t have the toxic anxiety that eats at you.”

As for Orfali, he said that had his wife been able to get a prescription for the Nembutal, the drug used in Oregon, she would have been spared so much suffering.

Jeri Orfali even ordered lethal medication on the Internet, but never used it.

“She really wanted pills as a backup, but she was too afraid to use them,” said her husband.

Medication obtained online often isn’t strong enough to induce death and a family member needs to be nearby to “finish off the job,” according to Orfali.

“She was a nonviolent person,” he said. “The last thing she wanted me to do was to put a bag over her head.

“She told me on her way out, ‘This doesn’t make sense to me in this condition. Can I try like in Oregon? That was the only thing she asked me in the end,” Orfali said.

Eventually, Jeri Orfali was given terminal sedation, but she endured 16 hours of tortured breathing before she had a blood clot and her lungs collapsed.

“It was like watching someone water boarded in front of you,” said Orfali, who wrote two books on the topic, “Death with Dignity,” and, “Grieving a Soulmate.” Meanwhile, he wonders about Steve Jobs’ death of respiratory failure just two weeks ago and whether he suffered as Jeri Orfali did.

“Everyone talked about how great things were and how he lived a great life. But did he have a good death?” asked Orfali. “Death is an ugly thing.”

End-of-Life Decisons: Family Consent Law Proposed

October 24, 2011

End-of-life decisions can be wrenching for families. In the early 2000s, the case of Terri Schiavo riveted the nation, as her family battled over whether to remove her feeding tube or keep her on life support. Now, 44 states have so-called “family consent laws,” which help determine which family member should make health care decisions. Missouri is one of six states with no such law, putting families and doctors in legal limbo. But, as KBIA’s Jacob Fenston reports, a bill headed for the Missouri legislature could change that.

Charley Shurtz knows how hard it can be to make a health care decision for another human.

“Many years ago, my mother was at work she had a job and she helped raise seven kids and she passed out at work,” says Shurtz.

She had lung cancer, and fluid was building up in her lungs and around her heart. It fell to Shurtz and his siblings to decide whether to go ahead with a procedure that could extend her life. They said yes.

“But when she come off the ventilator, she said, if I had my choice, I would have never been on that. Don’t you guys ever do that to me again,’” Shurtz says.

Now, technically, that decision was in a sort of gray legal area – at least in Missouri.

“Most people think that, you know, their spouse, their children, their parent, can deal with their health care issues, give consent,” says State Representative Bill White, Republican from Joplin.

“But there’s no legal basis in Missouri for anyone other than the patient themselves giving consent to authorize any medical care.”

That is, unless the patient has previously created an advance directive – but only about one third of Americans has done so.

Earlier this year, White introduced a bill to address the issue by establishing a default order of family members who could step in to make health care decisions, for patients without an advance directive.

But not everyone thinks that’s a great idea.

“I mean, the fact is, we live in a world of dysfunctional families,” says Daniel Baker, a lawyer with the Missouri Catholic Conference, a group opposing the bill.

“I would reckon, a good number of people would look at their immediate family members and say, uh, well, maybe he or she does not have my best interests at heart,’” says Baker.

But White says under his bill, disagreeing family members could take their case to court – just as they can now under current law.

But what about family members who aren’t even listed – who are not legally recognized?

“In reviewing the list, what was blatantly missing was the domestic partner, or the significant others, same-sex partners,” says Joanne Schleiker, a social worker at a hospital in St. Louis.

Schleiker says she’s seen many a case where a same-sex partner was excluded by family members.

“When if that patient were awake and able to say, they would want their partners to make those decisions for them, says Schleiker.

White says the problem is defining these relationships that are not recognized by the state of Missouri.

“Does your significant other for a week count, or does it have to be two years, or five years?”

White plans to re-introduce a new version of the bill at the beginning of the next legislative session in January.

New end-of-life health care regulations to take effect

October 10, 2011

SALISBURY — It is never easy to make end-of-life health care decisions for yourself or a loved one.

Health care professionals and lawmakers in Maryland have recognized the process and paperwork involved with medical treatment options is often cumbersome, confusing and overwhelming for many patients and their families.

In an effort to minimize concerns and streamline the decision-making process, a new regulation in Maryland, referred to as Maryland MOLST — Medical Orders for Life Sustaining Treatment — has been initiated to help guide patients and health care professionals through the process and ensure the patient’s wishes for medical care are carried out.

The law, scheduled to go into effect this year, requires a Maryland MOLST form be completed by or for all individuals admitted to nursing homes, assisted living facilities, hospices, home health agencies, and dialysis centers.

The MOLST form is intended to help physicians and other health care providers discuss and convey a patient’s wishes regarding cardiopulmonary resuscitation and other life-sustaining treatments.

MOLST orders should be completed for any person who wants to avoid or receive life-sustaining treatments; lives in a long-term care facility or requires long-term care services; or is at risk of dying within the next year.

“The MOLST form should prove to be beneficial to both patients and providers because it delivers specific orders for medical treatment and will be recognized in a variety of health care settings,” said Stephanie Mitchell, director of clinical operations at Peninsula Home Care.

“It will also help patients and decision makers understand life-sustaining treatments and discuss them with health care practitioners.”

Completion of the MOLST form will begin with a conversation between the patient and a qualified, trained health care professional.

The process allows any health care professional to define the patient’s goals for care, review possible treatment options on the MOLST form and ensure shared, informed medical decision-making.

All MOLST orders, however, must be signed by a Maryland licensed physician or nurse practitioner.

For more information on Maryland MOLST, visit www.peninsulahome care.com.