End-of-Life Choice, Palliative Care and Counseling

Patient-Centered Principles

We Listen. We Care. We Act.

November is National Hospice and Palliative Care Month, and the theme of this year’s observance is “We Listen. We Care.” As I wrote in my last post, Compassion & Choices listens to those facing life’s end, and our response is guided by our principles for patient-centered care. The third key component of our mission is action. We work to make people’s aspirations for the care they receive in their final days a reality.

Physicians cannot listen to the needs and desires of their terminally ill patients without time. Writing in The New Yorker, Atul Gawande quoted palliative care specialist Dr. Susan Block on the complexity of discussing end-of-life choices with patients and family members. “‘You have to understand,’ Block told me. ‘A family meeting is a procedure, and it requires no less skill than performing an operation.’” We continue to support federal policy to provide Medicare reimbursement for doctors who spend time in consultation with their patients to discuss end-of-life preferences.

And physicians must give patients full and honest information about the pros and cons of all treatment options, both those directed at the patient’s illness and others for pain and symptom management. Compassion & Choices advocates the passage of patient-centered consultation acts (PCCA), like the laws passed in California and last year in New York. A PCCA ensures that terminally ill patients learn about all legal end-of-life care options in the state. These laws encourage patients to ask for, and doctors to provide, information about end-of-life care options.

These laws reinforce the principle of informed consent, required for most medical procedures. Informed consent is more than a patient’s signature on a consent form; it is a process of communication between a patient and physician, an ethical obligation and a legal requirement. Now, these laws specify that such a discussion can include:

• The potential risks, benefits and likely outcomes of various treatments proposed, as well as potential risks and likely outcomes of refusing these treatments;
• The patient’s right to pursue, or refuse, continued treatment targeting the illness;
• The patient’s right to refuse or terminate life-sustaining treatments (such as a ventilator, feeding tube, cardiac device or medication) and their likely outcomes;
• The patient’s right to receive comprehensive pain and symptom management, and other care options such as hospice for palliation of symptoms and for supportive care.

Compassion & Choices worked hard for passage of these laws; we continue to work to implement their application appropriately within law and medical practice. They are important tools for empowering patients to experience final days that match their values and beliefs.

This month, we renew our commitment. We will listen to dying patients. We will help them get the care they wish for. We will act to ensure they have the broadest range of choice and care, and the autonomy to decide what they want for themselves.

Hospital mergers and protecting patient rights

In Louisville, Kentucky, Compassion & Choices is working to stop a proposed hospital merger from diluting patient rights. Under the proposed merger, the three hospitals would follow Catholic health care directives, including those that affect end-of-life care.

As government affairs director for Compassion & Choices, I want to give an update on our efforts in Louisville. I have been working with our partners MergerWatch and the National Women’s Law Center and many others in the Louisville area. We can’t let the imperatives of Catholic doctrine override patients’ end-of-life wishes. As reported this summer in the Louisville Courier-Journal:

Under the merger proposal, University Hospital will join Jewish Hospital & St. Mary’s HealthCare and St. Joseph Health System, whose parent company is Denver-based Catholic Health Initiatives. CHI will own 70 percent of the combined operations, assuming regulators approve.

When the merger was announced last month, officials said all the merged hospitals will follow Catholic health care directives. And while many wealthier patients could simply choose a different hospital, indigent patients have little choice but University Hospital for treatment, including end-of-life care.

“I don’t like what I’m hearing with this merger; patients have rights till the day they die,” said Lorri Keeney, whose 88-year-old mother died of natural causes in a nursing home under hospice care through Hosparus in May 2010 after numerous hospital visits. “I would’ve taken my mother out of the hospital if they had told me I had to abide by their doctrine.”

Keeney’s mother, Eleanor Caram, was Jewish and had a living will. But Catholic medical directives, which merger partners have agreed to abide by, say living wills won’t be honored if they go against Catholic moral teachings, which are open to interpretation.

If the merger goes forward, will the hospitals honor the carefully considered decisions people express in advance directives? We brought that question to the attention of the Louisville Metro Board of Health, Attorney General Jack Conway, Governor Steven Beshear, Secretary of Finance Lori Flanery, Louisville Mayor Greg Fisher and Kentucky lawmakers, Reps. Tom Burch and Mary Lou Marzian.

The Louisville public and others also raised questions. The American Civil Liberties Union and the Louisville-Courier asked Attorney General Conway to confirm that University Hospital is a public entity, and so must release its records related to the merger.

Conway, who is up for re-election, heard the message loud and clear. In a September 28th interview with the Courier-Journal editorial board he spent about 10 minutes of time on the proposed merger. Watch his response, beginning at around 5:00 minutes into this video.

On October 6, the attorney general issued an open records decision (ORD): University Hospital is a public institution and, therefore, accountable to the public’s interest.

Conway said University Medical Center Inc., which runs the hospital, “was established and created and is controlled by the University of Louisville.”

The decision does not directly address the merger but, as Conway suggested in the interview, it raises the likelihood patients’ rights advocates will challenge the merger, based on constitutional grounds related to the establishment clause.

The ruling could affect the merger because of the religious implications. Saint Joseph is owned by Catholic Health Initiatives, which follows Catholic directives that prohibit abortion, sterilization and euthanasia.

On October 19th, community members packed Louisville’s Memorial Auditorium at a forum sponsored by the board of health.

Partners in the controversial merger of three Kentucky hospital systems fielded dozens of questions about reproductive and end-of-life care, health insurance for employees and other issues at a community forum Wednesday that drew hundreds of people.

The following day in an editorial, the Courier-Journal distilled the concern we share with the public and other patients’ rights advocates:

The issue is whether a public hospital, operated by a public university and charged with care of the indigent population of this region (funded by tens of millions of public dollars) should have legal medical policies restricted by the rules of any religious group.

The Governor still must weigh in on the approval of this merger along with the Secretary of Finance and they have offered nothing to suggest a timetable. Compassion & Choices and its partners will continue to urge all parties to fully review the proposed merger and approve it only if the parties involved will preserve continued access to vital healthcare services, including care at the end of life.

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.”

Downsides of cancer rarely seen in black media

October 6, 2011

Few media stories on cancer venture into issues of death, dying and end-of-life care—and outlets directed at African Americans are particularly unlikely to do so, a new study suggests.

Historically, African Americans with advanced cancer have been more likely than whites to opt for aggressive treatment, and less likely to want hospice care.

The goal of hospice care is to improve quality of life for terminally ill people, treating their pain and other physical and psychological symptoms. There’s also evidence that hospice care, which is usually provided at home, does not speed death—and in some cases, may help people live longer than aggressive cancer treatment would.

But doctors often don’t bring up options for end-of-life care—even those caring for people with advanced cancer, said Jessica M. Fishman, the lead researcher on the new study.

Since people often get medical information from the media, Fishman and her colleagues at the University of Pennsylvania in Philadelphia looked at whether there might be racial differences in how the media cover cancer care.

And they found that while few mainstream media stories talked about the downsides of aggressive cancer treatment, or about hospice care at all, African-American media were even less likely to do so.

The researchers analyzed 264 cancer-focused stories that ran in any of four urban newspapers with a mostly African-American readership, or any of four African-American magazines, including Ebony and Essence. They found that none of the stories discussed hospice care.

In addition, only 14 percent mentioned the adverse effects of cancer therapies, and just 4 percent noted that cancer treatment can fail to cure.

Fishman’s team found that eight mainstream urban newspapers and national magazines like Time and Redbook did better, though not all that much.

A handful of stories (7 out of 396) talked about hospice or end-of-life care. Meanwhile, almost one-third gave some attention to the adverse effects of cancer therapy, while 14 percent mentioned that cancer treatment can fail.

“The news media rarely report on these issues,” Fishman told Reuters Health. “And some groups may be even less informed than others. I think that’s something the public should be concerned about.”

It’s not clear why African-American media were particularly unlikely to cover the negative sides of cancer treatment, or to cover hospice care at all.

And it’s also not clear, Fishman said, that the lack of media coverage actually affects terminally ill cancer patients’ decisions on treatment.

But she argued that patients, and the public in general, should get a more balanced portrayal of cancer in the media. “Lance Armstrong-like survival stories do not reflect the reality of many patients,” Fishman said.

It’s estimated that about half of Americans diagnosed with cancer will not survive the disease, Fishman and her colleagues note in the report. And African Americans tend to have higher death rates from cancer than other racial groups.

“I’d like to see the media not only offer people hope and hype, but some help as well,” Fishman said.

People with cancer, she noted, may well find that they have to bring up the issue of end-of-life care with their doctors, who are not likely to raise the question themselves. “Make it really clear that you want that information,” Fishman advised.

The bigger issue, she said, is that everyone needs to be more open about discussing death and dying. “We can put our heads in the sand about end-of-life care,” she said, “or we can find out how to make things better for patients and their loved ones.”

Read more: http://www.foxnews.com/health/2011/10/06/downsides-cancer-care-rarely-seen-in-black-media/#ixzz1bRW85iPI

Editorial: Dementia-care study troubling

The Sarasota Herald Tribune
October 3, 2011

A new study, focused on medical interventions among dying dementia patients, raises disturbing questions.

The study suggests that shuffling late-stage patients from nursing homes to hospitals and back raises government costs yet often fails to provide benefits that outweigh the risks.

Study authors said many patients would be better off staying put in a supportive nursing home, receiving palliative care that provides relief from pain linked to illnesses.

The study was published Thursday in the New England Journal of Medicine. Reportedly, it provided no evidence that the hospitalizations of late-stage dementia patients were financially motivated.

Yet it’s difficult to ignore the possibility. A nursing home gets lower government reimbursements for Medicaid patients (receiving custodial care) than for those who qualify for Medicare coverage at a skilled nursing facility following hospitalization.

“If you have a nursing home that is operating on a margin, it adds up. It can be a tremendous incentive to hospitalize these people,” the AP quoted Dr. Joan Teno as saying. Teno, a palliative care doctor and health policy professor at Brown University, is one of the study’s co-authors.

They analyzed 2000-to-2007 Medicare data, looking for such patterns as “multiple hospitalizations in the last 90 days of life” among cognitively impaired nursing home patients. The authors dubbed such interventions — which in some cases included the insertion of feeding tubes for people who could no longer swallow — “burdensome transitions.”

The research covered nearly half a million people, 19 percent of whom “had at least one burdensome transition,” according to a summary posted on the journal’s website. “In adjusted analyses, blacks, Hispanics, and those without an advance directive were at increased risk.”

The tendency to hospitalize varied widely by region, from 2.1 percent in Alaska to 37.5 percent in Louisiana.

Often, the illnesses prompting these hospitalizations — such as pneumonia, urinary tract infection, or dehydration — could be treated at a well-equipped nursing home. But Medicare and Medicaid payment policies don’t encourage that approach.

When it comes to end-of-life care, of course, decisions are rarely clear cut or easy. Painful ambiguity surrounds the entire subject.

A nursing home may send a patient to the hospital rather than take the risk — of injury or lawsuits — of trying a more conservative approach at its own facility.

In an editorial accompanying the study report, the journal points out a shortage of professionals trained in geriatrics. It notes that not all nursing homes “have the capacity to safely evaluate and manage changes in the condition of the clinically complex nursing home population.”

The study results affirm the need for families to discuss their care preferences — long before a crisis — and prepare for end-of-life decisions by completing “living wills” and other important documents.

The data also suggest that reducing preventable hospitalizations — a tenet of the national Affordable Care Act — holds promise for lowering costs and improving outcomes.

Though much of the Affordable Care Act is locked up in litigation, outcome-based research is moving forward.

That’s good. Judging by the new study results, there is no time to waste.