End-of-Life Choice, Palliative Care and Counseling

Posts Taggedquality of life

Advance Care Planning: Take Charge of HOW You Die

By ABC News
ABC News
August 22, 2012

Did you know that 70 percent of Americans have thought about end-of-life preferences, yet only 29 percent have completed an advance directive? Did you know that while 70 percent of people say they would like to die at home, 70 percent die in hospitals?

At present, conversations about end-of-life wishes happen all too often for the first time in an ICU around a patient’s bedside, prompted by daunting questions such as, “If your husband’s heart would stop, do you want us to start it again?”

This is the last question someone wants to take responsibility for making for someone they love. Siblings disagree, decisions are delayed, and regrets over the things that should have been said surface.

All of this time the patient lies in bed in discomfort, with diminished quality of life, having procedures they may not have wanted, in a place they never wanted to die in. We all know that death is inevitable, but is this the kind of death you would hope for?

As a community, we need to grasp that although we do not have control over IF we die, we can take charge of HOW we die. Advance care planning is about making these wishes known to your loved ones. Anyone who has been at a bedside of a person who has passed away knows that death is not exclusively a medical event.

And so these conversations need to focus not only on preferences for medical treatments but also on values, what you consider quality of life, how comfortable you want to be, how you want to be treated, and what you want your loved ones to know. These conversations require time and thought and are truly most valuable when they occur when a person is healthy, before an illness or injury.

How do we move our culture from avoiding the topic to embracing it? Multiple approaches need to be taken. Many are already in process. As a nation, every April 16 we celebrate National Healthcare Decisions Day. On and around this day community groups, churches, healthcare institutions, and other gathering spots are encouraged to host community programming on starting the conversation.

The media is starting to change — think of the recent movie “The Descendants,” the coverage of Randy Pausch’s last few months, and the upcoming “Death and Dying” series.

These and other thought provoking stories could easily be used as conversation triggers. A wealth of information is available on the internet as well as on advance directives, starting the conversation, frequently asked questions, etc.

In health care, the responsibility for this discussion needs to rest on both the PCP and the patient. Our PCPs need to not only ask us if we have an advance directive — a legal document setting forth your decisions about end-of-life care — but also educate us on why it’s so important to do one now. The right time and place to hear this from a medical provider is during a “well visit,” not in the hospital.  Checking to see that a patient has an advance directive should be as normal as checking their list of current medications.

Because the conversation can even be difficult for physicians, as educated consumers we have a responsibility to initiate it as well. The comfort level with having the conversation will increase as it becomes more commonplace; this is how real culture change happens.

Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” 

Don’t wait for the culture change to start the conversation; start it today.

Pastoral support, not life-prolonging care, improves QoL at end of life

By Sarah Guy
News Medical
July 18, 2012

Quality of life (QoL) at the end of life (EOL) is improved when advanced cancer patients avoid being hospitalized, when their worry is reduced, they are given pastoral as well as medical care, and when they feel they are in alliance with their physician, show results of the Coping With Cancer (CWC) study.

To date, there is no comprehensive model for the strongest predictors of QoL at EOL, says the research team, but the findings indicate that when medicine is unable to offer patients a cure, physicians may still positively and significantly influence their patients’ lives.

The challenge, remark Alan Zonderman and Michele Evans from the National Institutes of Health in Baltimore, Maryland, USA in an invited commentary, is in physicians’ and caregivers’ ability to develop and maintain effective integrated relationships with their patients that are strong enough to deliver the emotionally difficult messages relevant to prognosis, among other things. More

Oncology + Palliative Care = Winning Team

By Hollye Harrington Jacobs
Huffington Post
June 26, 2012

Right after my FBC diagnosis (f-bomb breast cancer for new readers), my husband and I had an information gathering week. After a series of diagnostic tests to determine the extent of the disease, we had a series of meetings to interview doctors to determine who would become a part of my/our health care team.

One big misnomer in our culture is that doctors (solely) develop a patient’s plan of care. No. No. No. This could not be farther from the truth! Patients have a real responsibility to be fully engaged in the development (and revision) of a plan of care.

After the testing was complete, we had meetings and interviews with the following doctors:

  • Two surgical oncologists (surgeons who specialize in breast cancer)
  • Three oncologists (doctors who specialize in treating cancer)
  • Two radiation oncologists (doctors who specialize in radiation of cancer)
  • Two plastic surgeons (doctors who specialize in reconstruction after a mastectomy)
  • One palliative care physician (doctor who specializes in pain management)

Whoa. Whoa. Whoa. Are you wondering, “Why palliative care?” Most people hear the phrase “palliative care” and think “buy the plot… she must be dying.”

We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief. If you take only ONE thing from this blog post (though I hope that you take more!), please learn that palliative literally means the relief of pain. This is such a pervasively-misunderstood concept in our culture, even in health care. Don’t even get me started.

Well, I already got myself started, so let me tell you that as a nurse and now a patient, I am all too familiar with the fact that surgeons and oncologists are not experts in pain management, despite inflicting a great amount of pain on their patients, which is quite an oxymoron, if you ask me. But it’s the truth. The silver lining is that there is an area of specialty focused on relieving pain and symptoms and it’s called… palliative care!

Incorporating palliative care into a patient’s care from the time of a diagnosis is deeply important to me because I have witnessed the benefits of palliative care as a nurse and experienced the benefits of palliative care as a patient. Consequently, I want every person who has to go through the wretched treatment for this disease to have access to the benefits of palliative care.

Such benefits include:

  1. Pain management
  2. Symptom management (e.g., fatigue, anxiety, shortness of breath, nausea, depression and constipation)
  3. Coordination of care
  4. Improved quality of life

Because the side effects of the disease and its treatment can linger… and linger… and linger, cancer has the potential to become a chronic issue. Speaking of which, I still can’t remember much of anything, courtesy of chemo brain. I also still can’t feel my toes, courtesy of the chemotherapy-induced neuropathy.

The great news is that the fields of oncology and palliative care are beginning to work together more consistently from the time of a patient’s diagnosis. This has traditionally not been the case because of the assumption that palliative care is only helpful at the end of life.

In fact, consistent with recommendations of the American Society of Clinical Oncology, the National Cancer Policy Board, and the National Comprehensive Cancer Network, concurrent palliative care is slowly but surely becoming acknowledged as a best practice for patients.

Finally, it is no longer the case that palliative care is consulted only at the time of a patient’s death, which is magnificent silver lining, if you ask me!

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