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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

From Death With Dignity, deathwithdignity.org:

As our partner organization, End of Life Washington gears up to celebrate the 10th anniversary of the Washington Death with Dignity Act next November, EOLWA Executive Director Sally McLaughlin is preparing for the next 10 years. We spoke with her earlier this month about the organization’s recent accomplishments, long-term goals, and strategies to confront challenging issues in the year ahead.

What was one of EOLWA’s most significant accomplishments in 2017?

The thing that has of late gotten us the most attention and press is our organization’s latest end-of-life planning document: the recently published instructions for oral eating and drinking. We worked hard to develop a document which allows a person to articulate her wishes about when to be offered food and fluids during late-stage dementia. We are pleased to offer this resource to all Washingtonians.

How do you measure EOLWA’s success?

We monitor how many Washingtonians die from ingesting medication prescribed to them by their doctors under the Washington Death with Dignity Act; then, we look to see how many were clients of ours. In 2014, there were 127 deaths; 124 of those were clients of ours. In 2015, there were 219 deaths, and 202 of those were our clients. We are seeing a subtle growth in people who are able to access and complete the Death with Dignity process on their own, without our assistance. From our perspective, that is a very positive development.

In the final analysis, we do not want to be a self-perpetuating organization. Our goal is to do our job right and so well that eventually we won’t need to exist. We want to see other organizations, especially hospices, take care of their own clients so that we don’t have to swoop in at the last minute. Now we are seeing other institutions taking care of their own patients who have chosen to end their lives using the Act. We are pleased to see the role we have played in helping organizations get to that point.

What are some examples?

We are supporting a designated social worker at the University of Washington Medical Center. She is doing such a phenomenal job that she doesn’t need us anymore, which of course is part of our goal. Making sure UW Medical Center has its systems and personnel in place helps them to better steward their death with dignity patients, leaving EOLWA in an advisory role.

We continue to work with Washington State hospices as well as facilities such as Seattle Cancer Care Alliance to support them as they develop robust protocols to respond to patient requests for death with dignity. We’re still the clearinghouse for information about end-of-life options and referrals, but we are seeing slow but measurable progress among healthcare organizations in our state.

It can be a challenge to provide services to patients in rural areas. How is EOLWA working to serve people outside of Washington’s population centers?

It’s a real challenge for us because of our desire to provide rigorous training and mentorship to people who work under the EOLWA name. Our normal process when you become a volunteer client advisor entails an in-person interview followed by an online information training, including quizzes which highlight understanding. You must attend a 3-day in-person training and attend monthly meetings, and you work with a mentor for a minimum of one year. When people live in rural areas, it’s a little harder to participate in our program. How do we mentor you long-distance? We’re working on building teams in less populous parts of the state. Given that there’s less demand for Death with Dignity in more politically conservative rural areas, we could do what we need to do with a small team. We are slowly but surely building that infrastructure.

What are you most excited about for 2018?

I am excited to continue the growth that we’ve implemented with regards to our volunteers and their choices for involvement. I am most excited to see us get a better foothold in other areas of Washington state. I have begun setting up meetings with providers and potential volunteers in new areas. We continue to canvass senior centers, distributing our brochure and connecting with staff and residents.

Through our workshops and seminars, we address not only how qualified individuals can access the law; we also provide education about all end-of-life choices. Part of that education includes ensuring that every Washingtonian over 18 is aware of how to create a viable advance directive and how to access the law.

I want every Washington resident to know that she has the right to explore death with dignity or physician aid in dying. I take it personally when I hear someone from out of state say, ”If I come down with [a terminal illness,] I’m moving to Oregon to use the death with dignity law.” People need to know that Washington is one of the states that has this option, and that we can provide support and guidance to help them get their needs met.

On a personal note, I feel so fortunate to be able to work with an organization and for a cause that is so inherently meaningful. I came to the Death with Dignity movement after 42 years in the world of education. This work is just as meaningful, if not more so. That is why I continue to devote my time to ensuring Washingtonians have the information and the support they need to die on their own terms, with dignity and control.

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