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End of Life Washington

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Full Instructions

Old and young woman touching foreheads

Your life.
Your death.
Your choice.

HASTENED DEATH AND DEMENTIA:  A NEW DEVELOPMENT

People are frequently disappointed to learn that Washington’s Death with Dignity Act, and similar laws in other states, do not help people with Alzheimer’s or other forms of dementia.  Our Death with Dignity Act requires that a person be mentally competent to choose a hastened death, and by definition, most people with serious, progressive dementia are not able to make an informed and reasoned decision about this subject.  Additionally, dementia is not the type of medical condition that leads to a six month or less prognosis–the mind and body can slowly deteriorate for years with dementia, and death is often the result of a different medical condition.

For years, End of Life Washington has offered information about the only legal option to hasten death for a person with dementia: Voluntarily Stopping Eating and Drinking (“VSED”).  This option is only for persons in the very early stages of dementia who still have enough cognitive ability to choose between life and death and enough fortitude to see the VSED process through.  (See a thorough discussion of VSED in the ‘Documents” section of this website or request more information on the process by calling our office.) The difficulty with VSED, besides requiring significant willpower and determination, is that a person with slowly developing dementia needs to choose to hasten death during the very early stages of the disease–while still legally competent and able to follow through on the decision. This means that the person might forego a few reasonably comfortable years of life in order to make the VSED decision and to carry it out before too much competence has vanished.

Another problem facing people with late stage dementia is that care facilities frequently will push or cajole people to eat and drink beyond the time when the person is interested in eating.  Caregivers often believe they have a duty to feed a patient regardless of that patient’s stated wishes.  Caregivers often interpret a person’s opening their mouth when spoon fed as a desire to eat when medical practitioners tell us that opening the mouth is more reflex than an expression of a desire for nutrition.  Almost all dementia patients eventually reach a stage where nourishment is unimportant to them.

EOLWA has recently drafted “Instructions for Oral Feeding and Drinking,” similar to an Advance Directive, which express a person’s decisions about when to be offered food and fluids during late stage dementia, when the person lacks mental competence. The “Instructions” list several objective conditions which should be interpreted by caregivers as the desire to stop eating and drinking, and thereby hasten death.  Success utilizing the “Instructions” depends on a supportive surrogate health care agent, who has power of attorney to make health care decisions, as well as supportive caregivers.

Please see: “My Instructions for Oral Feeding and Drinking” and the explanatory “About My Instructions for Oral Feeding and Drinking” at the beginning of the “Documents” section of this website.   If you wish to sign the document, persons from the EOLWA office can witness and notarize your signature.  Please call for an appointment.

What we do

End of Life Washington guides people in planning for the final days of their lives.

We provide 
free end-of-life counseling and client support services statewide to qualified patients who desire a peaceful death.

We encourage advance planning and set a new standard in Washington for advance planning documents with our End of Life Washington Advance Directive.

We promote the use of Physician Orders for Life-Sustaining Treatment (POLST) for those with serious illnesses. We provide these and many other documents at no cost.

We created and played a key role in leading the coalition that passed Initiative 1000 (the Washington Death with Dignity Act) into law in November, 2008 with nearly 60 percent of the popular vote. We now steward, protect, and uphold the law.

We advocate for better pain management, patient-directed end-of-life care, and expanded choice for the terminally ill. We do not suggest, encourage, or promote suicide or euthanasia.

There is never a fee for our services.                           

News & Announcements

by Sara Schilling, Tri-City Herald

Phillip Estes lived a long, fulfilling life.

A Harvard-trained physicist, his work took him around the country — ultimately to the Tri-Cities and the Hanford nuclear reservation.

He and his wife, Judith, were happily married for 54 years. They had two loving kids. They had so many wonderful times.

When Phil was diagnosed with cancer, he fought. He had part of his liver removed and endured other difficult treatment.

But, eventually, the cancer exploded throughout his body. He was in pain, with no hope of recovery. He wanted to die on his own terms.

However, accessing Washington’s Death with Dignity law — which provides a path for terminally ill people to end their lives — proved to be a significant challenge.

The option isn’t common or well-understood in this part of the state.

Phil’s daughter, Linda Estes, is determined to change that.

She’s on a mission to improve access and raise awareness — inspired by her father, who used the law to end his life in January 2016.

Death with Dignity isn’t the right choice for every person or family, Linda said.

But when it is, it should be far easier than it was for her family, she said.

Death with Dignity

Washington’s Death with Dignity Act took effect in 2009.

It allows terminally ill adults, who have less than six months to live, to request a lethal dose of medication to end their lives.

A doctor prescribes the medication, but doesn’t administer it. Patients must be able to take it on their own.

Calling the act “suicide” is wrong, saidSally McLaughlin, executive director of End of Life Washington, a resource and advocacy group.

“Suicide connotes a premature death that doesn’t need to happen — it’s the premature ending of a life,” she said. “The people who use Death with Dignity would live on if they could. They are already dying. They are simply choosing the manner and the hour of their death.”

More than 1,300 people have died after requesting lethal medication under Death with Dignity since 2009, according to the Department of Health.

Most of them have been from Western Washington — at least 90 percent each each year.

Experts point to lack of awareness and access as factors in the disparity between the west side and east side figures.

If patients and families don’t know it’s an option or how to access it, if health care facilities don’t participate or provide information, and if other resources are few and far between, it can be challenging to virtually impossible.

“The farther you go from Seattle, the more trouble you’ll have accessing Death with Dignity,” McLaughlin said.

‘It was in his control’

For the Estes family, the process was far from smooth.

Phil’s doctor at Kadlec Regional Medical Center in Richland agreed to give approval as the attending physician and write the prescription.

But then he discovered that doing so would break Kadlec’s policy, so the family was back at square one — making a flurry of calls to find help.

The family didn’t just need to find one doctor, but two.

Under the law, two physicians must sign off — the second to backstop the first, making sure the patient is competent and meets all other requirements.

“We’ve got two cell phones, three extension phones. Mom is carrying them around in a paper bag so whatever phone someone calls back on, we’ll get the call,” Linda said. “We called everyone we could think of.”

Finding a local pharmacy to fill a prescription — if they could even get one — also proved tough.

It was exhausting and frustrating, Linda said. “When you are in the middle of all that grief, you have about three brain cells to rub together” and the extra hurdles made it even harder, she said.

The Estes family could not find a local doctor to sign off as the attending physician. End of Life Washington eventually helped connect them family with a doctor in Spokane.

The doctor wanted to see Phil face to face, not by telemedicine, so the family had to figure out how to get the ailing 81-year-old, who struggled to sit up even for short periods, to the appointment.

They settled on a cabulance, to the tune of $1,400.

They also found a second doctor, and a Spokane pharmacy filled the prescription.

When it was finally settled, Phil was relieved, his daughter said.

“I put the little bag in Dad’s hand, and he was like, ‘Ahh,’” she recalled. “It was in his control.”

Advocacy work

As part of her advocacy work, Linda reached out to Providence St. Joseph Health — Kadlec is part of the Providence network — in hopes of updating Kadlec’s policy.

She researched, sent off emails, even traveled to the Renton headquarters for an in-person meeting.

Kadlec’s position isn’t changing — it doesn’t allow doctors to participate or fill prescriptions — but there is now talk of adding specifics about where staff can direct patients who want more information.

The Tri-Cities’ other hospitals have varied stances on Death with Dignity.

Lourdes Health in Pasco doesn’t allow its doctors to participate.

Trios Health in Kennewick, on the other hand, does allow physicians to participate if they choose.

Trios is the area’s only public hospital system. Lourdes is a private Catholic institution. Kadlec is nonreligious, although Providence is a Catholic health network.

Linda plans to speak about Death with Dignity to several local groups in the coming months, from Rotary to the Benton Franklin County Medical Society.

She also plans a series of public seminars, starting with a session on “End of Life Choices” on April 26 in Pasco.

It’ll touch on Death with Dignity, but also other issues surrounding the end of life.

In July, a session on advanced planning is scheduled. And in September, Linda will hold a session for people interested in becoming volunteers.

A variety of volunteer options are available, from helping publicize events, to picking up prescriptions, to working with families directly and even being present at deaths.

During the session, “we’ll talk about what (prospective volunteers) want to do,” Linda said.

‘Force of nature’

McLaughlin said Linda Estes is a “force of nature” who’s doing important work.

“She speaks from deep experience and is very committed. She’s working hard to see that the Tri-City area has reliable, robust access to Death with Dignity for those who want it,” she said.

The people who want it tend to have some things in common.

Along with being from the west side, they’re most often white and have at least some college education.

They also range in age; in 2017, the span was 33 to 98 years old.

In most cases, they have cancer, although neurodegenerative diseases such as ALS also make the list, along with other illnesses.

In about one-third of cases, people who obtain the medication don’t end up using it, McLaughlin said.

Some become too sick to take it on their own, as required. Others decide they ultimately don’t want to.

In some cases, “simply knowing that they have a choice at a time in life when their choices have been drastically limited is palliative in nature,” McLaughlin said. “People are relieved to have a choice.”

Peaceful and calm

Phil Estes was a practical man, his daughter said

When treatment was still an option, he pursued it. But when his condition worsened and “the only option left was suffering, it didn’t make sense to him,” Linda said.

He said his goodbyes to friends and loved ones. On Jan. 4, 2016, he was ready.

Linda prepared the medication, with her longtime love, Paul, on hand for support.

Phil started the process of taking it. “He asked for music, and we put ‘The Lion King’ on,” Linda said. “I held one hand and Paul held the other and we just talked.”

By then, they’d said all the big things. They were close. Phil was a kind, wonderful father, Linda said.

“He was not ashamed to tell me that he loved me and he was proud of me. If I asked for advice, he would give it. And he would take advice from me,” she said.

They had a loving relationship.

Eventually, he laid back and closed his eyes. He said he was getting sleepy. Before too long, he was gone.

Linda had been scared of death, but watching her father’s passing changed that. “It was very peaceful, very calm,” she said.

It was what he wanted. And in the difficulty and challenge, Linda found a mission.

“It’s every family’s choice to decide what to do. Whatever you choose should be easy. It’s legal. It should be easy,” she said. “It should be fair and equitable for everyone in the state.”

The April 26 seminar is at 5:30 p.m. at the Mid-Columbia Libraries branch in Pasco.

To learn more about it or future sessions, or to inquire about volunteering, email endoflifetricities@gmail.com.

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