End-of-Life Choice, Palliative Care and Counseling

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Hospice program among most misunderstood

By Bristol Herald Courier editor
Pharmacy Choice
July 1, 2012

This is the third article in a continuing series about one woman’s struggle with a rare form of incurable cancer and her choice to spend her remaining days in the care of Wellmont’s hospice program and those who are providing aid along her final journey.

The Wellmont Hospice House might be the most consecrated spot in the Twin City because so many prayers have been voiced there and on behalf of its patients.

Like the program it represents, however, the 10,000-square-foot facility near Bristol Regional Medical Center might also be the least understood.

“Hospice is not really about dying. It’s about living every day to the fullest with the time that you have,” hospice program Director Jackie Everett said.

Rather than housing the terminally ill until they pass away as many think the facility is designed to provide health care so those patients can return home, or to give their families a brief respite from caring for them, Everett said.

“When we first opened, there was that mentality that people come here to die. Yes, some people do die here. But a lot of people thrive here. A lot come, spend a few days and go right back home,” she said.

Like hospice programs nationwide, the vast majority of Wellmont’s patients remain in their own homes while receiving regular visits from nurses, nursing aides, medical social workers, chaplains and others responsible for making them comfortable.

“This facility is really just an extension of our home-care program. Home care is the biggest part of what we do. This facility is used for our patients in the home-care program who get into a problem with a symptom that can’t be managed at home. They can come here so we can do that around-the-clock care, so we can get that symptom back under control, so they can go back home,” Everett said. “Our goal is to keep people at home as long as possible, if at all possible.”

Federal regulations mandate that no more than 20 percent of a hospice program’s total patient days can occur in a clinical setting such as the hospice house.

At any given time, Wellmont’s hospice program typically serves between 60 and 100 patients in 13 counties in East Tennessee and Southwest Virginia. The Hospice House has eight patient rooms.

The local program began in 1994 and the building opened in 1996. At that time, it was the first free-standing hospice facility in Tennessee and remains the only free-standing unit between Knoxville and Charlottesville, Va. It employs 55 nurses, aides, social workers and others, with about 15 working at the facility.

National perspective

More than 5,100 hospice programs currently operate across all 50 states, the District of Columbia, Puerto Rico, Guam and the U.S. Virgin Islands, according to a 2011 study by the National Hospice and Palliative Care Organization. The first was established in Texas in 1974.

Across the U.S., 1.58 million people received hospice services in 2010, the most recent year figures are available. Of that total, 1.02 million died, 292,000 remained in hospice and 259,000 were discharged for extended prognosis, to seek additional treatment or other reasons.

In 2010, the average U.S. hospice program cared for about 117 patients daily and the median daily census was 64 patients, according to the study. More than 83 percent were paid for by Medicare, compared to 8 percent by private insurance and nearly 5 percent by the Medicaid program. Nationally, hospice programs provided care at no charge to about 1.5 percent of patients.

Misunderstood

Despite operating here for almost 18 years, hospice officials continually try to educate the community about what exactly they do and it can be challenging, Everett said.

“It is difficult talking about hospice because people don’t want to talk about the thing we’re all assured to do,” Everett said of dying. “It’s not the conversation that you have. Getting people who want to talk about such things is a little bit difficult. Unfortunately, sometimes they wait until that conversation has to be had.”

To that end, Wellmont officials regularly speak to civic organizations, church groups, at nursing homes or host panel discussions with caregivers, attorneys and others about health care decisions and dealing with the end of their lives.

Ironically, some of that communication is internal and directed toward health-care professionals.

“Doctors often get little formal training in proper end-of-life care,” said Dr. Laura Cunnington, the hospice program’s medical director. “It’s not been that many years since I was in school and we received very little.”

In response, Cunnington and the hospice program have been working with the East Tennessee State University medical school to include hospice and end-of-life training.

“We have a very good working relationship with ETSU and lot of their residents will come and make rounds with Dr. Cunnington and frequently make home visits with the nurses,” Everett said. “It does open your eyes to a different side. When you’re in a patient’s home, you’re not in control like in the hospital. If they’re in the hospital they’re more likely to take medication. At home, it’s their turf and they may decide they don’t want to.”

Qualifying for care

Qualifying for hospice care requires two physicians to declare a patient’s life expectancy is likely six months or less.

Admission also means the patient decides to suspend aggressive therapy or medical procedures and focus on comfort, Everett said, adding that if a patient isn’t ready they aren’t admitted into the program.

“A patient can change their mind and come out of the hospice program at any time,” she said. “They always have the right to say they want to go back and have another treatment or another procedure. Medical advances happen every day. A new treatment or a new medication comes on the market and people want to go check it out. That doesn’t prevent them from being able to requalify. They can always come back.”

Failure to die within six months also doesn’t disqualify them.

“Patients can be recertified and won’t be removed from the program for living longer, as long as physicians are willing to make that determination,” Everett said. “We also have to see the decline that is expected with that disease progression.”

The average length a patient is in the Wellmont program before passing away is about 30 days, or about half the national average. That is due to some hospices having a large percentage of nursing home patients, Everett said.

Hospice care is fully covered under Medicare part A, most Medicaid programs and most private insurance have some hospice provisions, Everett said.

Full-time medical director

One of the physicians charged with certifying that patients qualify is Dr. Cunnington, who became the program’s medical director three years ago.

A California native who began working in hospice in Reno, Nev., she said the discipline chose her.

“The hospital I was working for had a need for a part-time hospice physician, so I thought that was something I could do. Within two to three years, I realized that was where my heart was and I’d stumbled into where I was supposed to be.”

Because that facility didn’t offer a full-time position, Cunnington began looking around and found the Wellmont program. She accepted the position and moved her family to the region.

Cunnington succeeds Dr. Benton Cowan, who juggled the role with a private practice before retiring and Dr. Sue Prill, who continues to practice in Bristol, Tenn.

“He [Cowan] did a great job for us and established where we are,” Everett said. “When Dr. Cunnington came on, we needed a dedicated medical director who isn’t doing another practice on the side. She is responsible for the palliative [relieving pain and stress of serious illness] care at Bristol Regional, but she’s ours. She’s here for us and in the building a lot.”

Cunnington often deals with misconceptions surrounding her job.

“When I tell people I’m the medical director of hospice, their first reaction is, ‘Oh, that must be so sad.’ There are sad parts to it, but I don’t find it any sadder than doing family medicine,” Cunnington said. “The good I can do for patients and families in hospice and palliative medicine is so vast. It’s easy. I have the best job in the world.”

Career of service

Hospice became an unexpected calling for Everett, who was the second nurse hired into the program when it began in 1994.

She originally worked in surgery and orthopedics, but switched to home health after starting her own family.

“When the conversation started about starting a hospice program, I was kind of pulled in that direction. I was apprehensive but had someone in upper management who wanted me to do this. I began as a home-care nurse and then advanced to middle management and now manager,” Everett said. “I can look back now and be sure everything that happened before was to lead me here. I wasn’t real sure while it was happening.”

Rewards have outweighed any negatives.

“We get just as much as we give. We learn so much from our families and our patients,” Everett said. “This is a very important part of life; a very important passing. And how we help them deal with this now will set the stage for generations to come.”

Doctor-patient relationships

In her role, Cunnington sometimes bridges the gap between doctors and patients, often taking over caring for a patient.

“With hospice across the nation, surveys show patients feel like they’ve been abandoned by their physician. That’s the single biggest complaint,” Cunnington said. “If they have a relationship with their physician, I try to encourage that physician to continue to follow that patient. If the patient doesn’t have an attending physician or doesn’t have anyone they have a good relationship with or the physician can’t or doesn’t want to I’m more than happy to follow any patient as the attending physician.”

It’s a role she fills for about one in three patients in the program.

For some doctors, Cunnington said, hospice might seem contrary to their training. Others struggle with the emotional toll.

“We are taught in medical school that we fight, fight, fight against death every patient, every time and we lose. Not a single physician anywhere has managed to keep a patient alive forever,” Cunnington said. “For a lot of physicians, I think it feels like a failure when their patients die. Sometimes, it’s very personal to them.”

Simultaneously, she said, the stress on families is monumental.

“Families are dealing with so much. They’re dealing with a terminal diagnosis, they’re trying treatment and the treatment’s not working well and they’re angry. They’ll be angry at anybody who presents themselves and often that is the physician. There are all kinds of emotions and feelings on both sides. It can be really complicated for doctors too,” she said.

Oncologist Dr. Sue Prill has been involved in hospice for decades both here and in Texas and left a university practice there to enter private practice in Bristol.

“At a university, you see a patient then somebody else sees them and you never see them again. I like taking care of patients and families from beginning to end. I want to walk every step,” Prill said. “We have the option of managing our own patients or letting Dr. Cunnington manage. In oncology, we usually manage our own because we have such a relationship with them. A lot of people don’t.”

Different kind of care

While the program has a full-time medical director and staff, the care offered at Hospice House is different.

“We don’t have all the bells and whistles you’d expect at a hospital, but then again we’re not going to do all those things they do at the hospital. We’re focused on comfort, quality of life and respecting what someone’s priorities are,” Everett said.

Studies show most terminal patients actually live longer in hospice between 30 and 80 days longer depending on the illness than either on their own or in a hospital.

That shouldn’t be surprising, Cunnington said.

“If you think about all of the services hospice provides, we come into the home, we can be there regularly, make sure the patient is taking their medicine right, eating right, taking their medicine when they should,” she said. “Otherwise, they’re trying to do it themselves, it’s difficult, they already have some debility and they might end up in the ER. If we can keep them stable at home, they can end up with a smoother, happier, longer life.”

The program also provides some medications, medical supplies, equipment like hospital beds, walkers and oxygen, to enable patients to remain at home and be comfortable, Everett said.

“I treat palliative patients at the hospital and talk with them about their wishes. Everybody wants to go home is the goal,” Cunnington said. “That’s what we try to make happen. The flip side is if you go home too fast you just bounce right back in the hospital and that’s no good for anybody. So if they can go home with hospice, we can be there to support them and their family.”

The philosophy softens from the traditional, aggressive approach of medications, procedures and testing to subdue a disease or condition.

“Just because we can do something doesn’t mean we should. Sometimes another test, another tube may not be the right thing to do,” Everett said.

Additional support

Hospice care extends beyond dispensing pills and fluffing pillows. Every employee is trained to assist patients and families with their emotional needs and spiritual support.

“Part of what we do is a spiritual assessment,” Everett said. “How can you address this point in someone’s life without having a conversation about spirituality and what are your convictions about this life and what else is there?”

Faith is also an important component for those working in hospice care, Cunnington said.

“Families often ask how long is left. I tell them some guidelines of what I expect to happen, but I also tell them I’m comforted and humbled there is someone stronger, smarter and more powerful than me that ultimately gets to make that decision and when it happens, it will be OK,” she said.

The program also offers bereavement counseling for families for as long as 13 months after their loved one passes, and hosts a series of memorial events.

Along the way, they also provide some old-fashioned fun.

“We’re almost a Make-A-Wish foundation,” Everett said of helping patients acquire concert tickets, visit water parks and aiding one 96-year woman to parachute out of an airplane. Another time, a hospice volunteer drove one patient and his family to the beach.

“It’s all about what’s your priority right now,” Everett said. “What’s the most important thing you want to do with the time you have not the time you have left but the time you have? If we accomplish that, what’s the next most important thing?”

Hospice patients have an advantage over everyone else, because they know their time is short, Everett said.

“The rest of us just take it for granted we’ve got forever to get done what needs to be done. These people have a little bit better idea when the train might leave the station; when that window of opportunity might close. So they’ll set a higher priority of talking to the people they need to talk to, doing the things they need to do,” Everett said. “It’s not about death and dying. It’s not. It’s about living every day to its fullest.”

Future plans

From serving a growing geographic region to addressing the needs of seriously ill children, the program has grown dramatically, Everett said.

“We have definitely expanded the territories we go to. We’re one of the few in the area to do pediatric hospice,” Everett said. “Within the last two years, the guidelines have changed. [Children] can have hospice support and still have aggressive therapy to try and cure their illness. Because they’re a child, they need that support and holistic approach hospice gives.”

The program is also involved with the James H. Quillen Veteran’s Affairs Medical Center and a new volunteer program is under way, Everett said.

“We are working to recruit veterans as volunteers to serve the veterans we have as patients, because they have a unique insight into what those who’ve served their country have gone through,” Everett said.

The program relies on volunteers, who do everything from file papers to help out in the Hospice House kitchen. Area churches provide food and financial donations are directed to aid patients without insurance coverage, Everett said.

“We have wonderful support from the community in Bristol as well as Kingsport, Hawkins County and the mountain region,” Everett said. “Our strategic plan is to keep expanding, offering more and more services and we’d really like to have another facility like this one in the other areas Wellmont serves.”

Time Magazine’s Cover Story on End-of-Life Care

“How to Die” reads the cover of the June 11th issue of Time Magazine. Joe Klein writes about his parents’ approaching the end of life, and about the dramatic improvement in their care when they transitioned to a facility without incentives for unnecessary interventions.

The full story will soon (or immediately, for subscribers) be available online, and at newsstands later this week. Watch Joe Klein’s discussion now at Time.com.

Dr. Marcia Angell on Death with Dignity

Click to watch.

In this news video, Heather Clish remembers the comfort and peace of mind
her father gained from having the option of aid in dying in Oregon. In the
discussion that follows, of Massachusetts’ proposed Death with Dignity
law, Harvard Medical School’s Dr. Marcia Angell speaks in support of aid
in dying. She says when doctors can no longer heal, they have two duties:
to support their patients’ self-determination, and to relieve suffering.

Hawaii Doctors Form Aid In Dying Advisory Council

Honolulu Civil Beat

In his 35 years as an oncologist, Dr. Charles Miller has seen a lot of patients with breast, prostate, colon, lung or ovarian cancer.

For those at the end of their lives, most are either in lots of pain or experiencing a poor quality of life.

“They say to you, ‘Doc, I want to get this over with. I just want to finish this,’” said Miller. “And it is a decision between the patient and the physician.”

Dr. Charles Miller
Dr. Charles Miller

Typically, a patient will be in a hospice and a nurse will call the doctor to get permission to increase a morphine dose so that the patient will not wake up.

“But that does not give the patient control or choice,” said Miller. “I know that there were patients who wanted to have more control — who wanted to say, ‘Doctor, I want to do this.’”

The problem has been uncertainty among many doctors about how to provide that control, and whether there is a legal risk.

To help doctors, Miller has helped form a new group called the Physician Advisory Council for Aid in Dying, or PACAID. The four-member council will help doctors “empower” their terminally ill patients, including prescribing lethal barbiturates.

PACAID is likely to have an impact locally on the socio-political debate over aid in dying.

So-called Death With Dignity legislation has met with strong opposition from churches, some social-service agencies and end-of-life care providers at the Hawaii Legislature, and lawmakers have repeatedly heeded their concerns.

But PACAID’s establishment also comes in the wake of a January survey by QMark Research of Hawaii that found 76 percent of doctors agree that “people in the final stages of a terminal disease should have the right and the choice to bring about their peaceful death.”

Equally important, say supporters of the aid-in-dying movement, is a growing belief that the courts and state and federal governments do not have to be involved.

Groups like Compassion & Choices, which has a local chapter, argue that there are already laws on the books that favor autonomy when it comes to end-of-life decisions.

“The bottom line, in overhwhelming numbers, people are saying this is not the government’s business, that this is between a patient and their doctors,” said Dr. Robert Nathanson, another member of PACAID. “So, if that’s the case, doctors need to have some kind of guideline. And we felt that PACAID was needed.”

Rigorous Process

PACAID is described as first-of-its-kind in the nation, and physicians in Montana are in the process of starting a similar council.

Beside Miller and Nathanson, PACAID’s other founding member was Dr. Max Botticelli, who passed away last month.

Two other Hawaii MDs — Clifton S. Otto and John Samuel Spangler — are also council members. PACAID will also lead and support a larger a network of supportive physicians.

While PACAID doctors could prescribe life-ending medication, that is a decision that must go through a rigorous process. PACAID members have adopted best-practice guidelines from states like Oregon and Washington where aid-in-dying laws exist. An Aid-in-Dying Practice in Hawaii—Physician Guide and pro-bono legal counsel will also be provided.

“We see the council as an advisory and consultative source, and one of the guidelines is that we would never write any prescription without collaboration and getting all that medical information,” said Miller. “We would be willing to write a prescription, but ideally it would be best if the primary doctor writes it.”

Miller added, “We do understand there are physicians who are not comfortable with this for what ever reason. So we see us as helping the patient, to give support to them for their choice for end-of-life care.”

Compassion & Choices Hawaii — a 501(c)(3) — will provide staffing to support administrative needs of PACAID physicians, who are volunteers and do not receive compensation.

How PACAID and its mission will be received is unclear.

While PACAID and Compassion & Choices believe Hawaii law allows doctors to advise patients on ending their lives, Hawaii Attorney General David Louie issued an opinion in December stating that one of those laws — a 1909 statute regarding Hansen’s disease patients — does not make doctor-assisted suicide legal.

The opinion came at the request of state Sen. Josh Green, an MD, who has held hearings on Death With Diginity.

One critic of Death With Dignity, Allen Cardines Jr., executive director of the Hawaii Family Forum, was alarmed to hear of PACAID’s formation.

“This is the first I’ve heard of it, but, top of mind, I would be very concerned about a bunch of doctors going around providing aid in dying,” he said. “I think doctors should provide aid in living, not aid in dying.”

Not Expecting Flood of Applicants

QMark Research of Hawaii conducted phone and fax interviews from Jan. 5-23 by sampling from MD listings in each county.

The specialities were cardiovascular disease, family and general practice, geriatrics, immunology, infectious disease, internal medicine, nephrology, oncology, hematology and pulmonology.

The sample size was small — just 43 doctors completed the interviews, yielding a margin of error of plus 15 percentage points. But three out of four agreed that people in the final stages of a terminal disease “should have the right to bring about their peaceful death and the decision to receive medication to help is a personal decision between patient and doctor.”

And nearly nine in 10 doctors agreed end-of-life decisions “should be an individual decision and the medical community, rather than government, should establish practice guidelines to prevent abuse.”

Just 57 percent of doctors, however, favored allowing their terminally ill patients the choice to request and receive medication from their doctor “to bring about a peaceful death.”

PACAID’s Miller and Nathanson say they are not worried about legal repercussions.

They also do not expect to be flooded with requests for lethal doses. They base that on the experience of Oregon, which, in the 14 years since it passed a Death With Dignity law, saw only 525 patients actually use the medication.

“All the concerns are way overblown,” said Miller.

“There may be a few requests, but I am willing to bet that a majority of them won’t quite understand what the regulations are,” said Nathanson, who adds that he has turned down requests from friends. “The only reason they wanted the pills is because they are elderly, but they are perfectly healthy. I told them, ‘You don’t qualify and I hope you never do.’”

Nathanson, who rejects the argument that prescribing lethal medication is enabling suicide — “Terminal people don’t have a choice, they are going to die from disease” — said the drugs may actually produce an unexpected outcome.

“One of the paradoxes is that when a patient gets the medicine, they frequently will live longer than expected,” he said. “The hospice nurse will tell the family that their mother who wasn’t eating hardly at all or watching TV or reading or interacting is now eating like a horse and now doing those things. It’s because the person no longer has that toxic anxiety. They know that they are empowered if things become intolerable. And the definition of that is whatever the patient says is intolerable.”

Read the story at its original location: Honolulu Civil Beat

Aid in Dying 1994 – 2011: Data from Oregon’s “Laboratory” is Complete

Seventeen years ago the people of Oregon took a bold step in end-of-life care and comfort. By citizen initiative, they adopted eligibility criteria and practice guidelines for terminally ill, mentally competent adults to obtain medication that would ensure peaceful dying. I was one of the drafters of that law, and I have stood by every word ever since. For years, when reporters asked what I would change in the law, I replied “one comma,” to clarify that impaired judgment from any type of mental dysfunction disqualifies a patient from making a request. Subsequently, we did change that comma.

Fourteen years of experience integrating aid in dying into Oregon medical practice, three years replicating that experience in Washington and two years with a different regulatory model in Montana now inform policy-makers. Our work to craft subsequent Death with Dignity Acts and aid-in-dying policies reflects the wisdom gained from practice.

Opponents believed catastrophe would befall Oregon and medical practice would suffer, but the opposite occurred: End-of-life care is robust, thriving and increasingly patient-centered in Oregon. Thousands of patients find comfort every year knowing they do not have to suffer unbearably. No evidence exists of anyone harmed. Opponents’ assertions to the contrary rely on vast conspiracy theories, fraud and cover-up by Oregon hospices and the hospice association, officials at the Department of Health, the medical disciplinary board, and police departments in communities across the state. These scary stories hold no credibility, and polling reveals a full 77% of Oregonians support their Death with Dignity Act.

Proponents believed terminally ill patients want and need assurance they can control the time and manner of their dying, and will apply profound thought and care before ever exercising this control. We believed nothing could override doctors’ drive to cure disease and prolong life, but that as death inevitably approaches, most doctors would allow qualifying patients this measure of comfort. Those beliefs have been validated.

Oregon’s data and experience has revealed other truths. We could not have predicted all of them, but they carry important lessons for our future advocacy:

1. Oregon’s Death with Dignity law says patients may express a “wish to die.” Data and experience contradict this. We now know patients approaching death and planning for peace have no wish to die. They wish only, if death is imminent, that it be as peaceful and humane as possible.

2. Oregon’s law says a physician may provide, and a qualifying individual may receive, medication “for the purpose of ending his or her life … .” Data and experience indicate this statement of purpose is inaccurate. Patients making a request want assurance, and they have made no decision about whether to ingest the medication. Fully 40% of patients who completed the entire qualifying process in 2010 either did not fill the prescription or did not take the medication. Experience teaches the purpose of the prescription usually is to provide comfort and peace of mind. The purpose is to lend substance to the fondest hope – for a peaceful death, at home with loved ones near. The purpose is to improve the quality of life for a dying person. The purpose is not to cause death, for cancer or other fatal disease is already producing that end.

3. Physicians embrace clear practice guidelines. They are eager to conform to the expectations of their peers. Many Montana physicians would have welcomed further guidance from the legislature to round out the broad aid-in-dying parameters laid out by the Montana Supreme Court. Legislators declined to adopt guidelines, so the Court’s public-policy findings guide Montana’s aid-in-dying practice, which is also informed by practice in Oregon and Washington, and relevant authoritative medical literature.

4. As much as doctors embrace practice guidelines, they do not appreciate government-required paperwork and the idea that Big Brother can intrude into the intimate and private doctor-patient relationship. For fourteen years Oregon’s medical community has been heroic and diligent in completing elaborate and duplicate forms for every completed aid-in-dying request and meeting onerous reporting deadlines. Some have faced investigation by the medical disciplinary board for minor technical omissions on these forms. These physicians endured intrusive investigations that never revealed actual violation of the law.

As the U.S. Supreme Court intended, Oregon has served as a laboratory to test the impact of a new end-of-life option on patients, physicians and end-of-life care. Washington’s data and experience reproduced the findings from Oregon. The “laboratory experiment” is complete, and the results will inform our advocacy from now on.

· We will work for policy that reflects community standards, establishes clear guidelines and guides physicians in safe and responsible aid-in-dying practice, without burdensome government reporting on every patient encounter. Bureaucratic paperwork has provided important data demonstrating the safety of aid in dying, but it is not responsible for making the practice safe. As is clear in Montana, physicians meticulously adhere to a standard of practice defined by the bounds of the Court decision, without the needless and intrusive burden of government reporting.

· We will affirm the true purpose of aid-in-dying medication is to provide comfort and improve the quality of life for dying patients. Physicians intend to comfort, and patients intend to acquire the ability to escape unbearable suffering.

As advocates we have defended the law from multiple attacks. As stewards we have guided patients, families and medical professionals through the eligibility requirements, procedural guidelines and reporting duties of aid in dying. As investigators we have observed the law’s provisions play out at countless bedsides, living rooms and kitchen tables across the state. Medical studies, state reports and our own experience inform our “post-Oregon” advocacy. We must not ignore the lessons of Oregon’s data and experience.