New ‘Instructions’ Could Let Dementia Patients Refuse Spoon-Feeding

June marks the two-year anniversary of California’s End of Life Options Act (EOLA). Between June 9 and December 31, 2016, 111 patients were reported to have died following ingestion of aid-in-dying drugs prescribed under EOLA.

While controversial, the law has stringent controls

The law has been extremely controversial, opposed by many groups who argue that it creates too many opportunities for abuse. Yet the law, as it is structured, has stringent controls. Those with fatal, debilitating diseases who wish to take their own lives must get their doctor’s order and an opinion from a second doctor about the severity of their conditions. The act must be carried out within a certain time frame. The fact that there have been relatively few assisted suicides in California since the law was passed indicates to many that the law is fair and is working.

AHD: The legal document that allows people to detail how they want to die

At California Document Preparers, our Living Trust package includes an Advance Healthcare Directive (AHD). It is this document in which people can detail their final wishes about how they will die—if they want nursing care or prefer to die at home. If they want to be surrounded by their families or if they prefer to enlist the care of hospice and refuse artificial efforts to be kept alive. AHDs are the legal documents that record the ability to halt interventions, treat the patient’s pain and allow them to die as peacefully as possible. An AHD includes patients diagnosed with progressive dementia who can make end-of-life decisions before the disease robs them of their ability to sign legal documents. This practice has not included provisions to refuse food and fluids offered by hand—until now.

Washington state has new end-of-life guidelines for dementia patients

A Washington state agency, End of Life Washington (EOLWA), advocates for medical aid in dying and has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life. The group helps people using the state’s 2009 Death with Dignity Act, recently posted new Instructions for Oral Feeding and Drinkingon its website.

The guidelines are directed at those with Alzheimer’s diseaseand other progressive forms of dementia. It instructs caregivers not to provide oral food or fluids under certain circumstances. “These instructions are groundbreaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms”, said Sally McLaughlin, executive director of EOLWA. “We get calls from people with concerns about their loved ones with dementia feeling like they’re being force-fed. Those with dementia understand that as they stop eating, they would like no one else to feed them.”

The new guidelines have both their critics and proponents

As with the death with dying law before it, these new guidelines have their share of critics who have concerns about potential mistreatment of vulnerable patients. They fear that these guidelines could be used essentially to starve the elderly or incapacitated. Proponents welcome the new guidelines, believing that they help define the uncertainties surrounding assisted feeding at the end of life.

Guidelines target those who show signs of not wanting food

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note. “If I accept food and drink when they’re offered to me, I want them,” the document states. But if the person appears indifferent to eating, or shows other signs of not wanting food, turning away, spitting food out, coughing or choking, according to the guidelines, this is when attempts to feed should be stopped, and it’s at this point that caregivers should respect those actions.

“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states.

The new guidelines are not legally or ethically binding. It’s important to keep in mind that these are guidelines; they are neither legally nor ethically binding. They do, however, bring increased visibility to an issue that we likely will hear more about as the baby boomer population ages. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

An Advance Healthcare Directive is part of our Living Trust package

An AHDis part of our Living Trust package. If you need to create or update your Trust, contact California Document Preparersat one of our three Bay Area offices todayto schedule an appointment.Our dedicated team is helpful, compassionate and affordable.

End-of-Life Options Act Raises Issue of Incapacity for Living Trust

End-of-life documents, an important part of California Document Preparers’ services, often lead to discussions about related issues. October’s passage of the End of Life Options Act, or the Physician-Assisted Suicide Law as it is called by its detractors, promises to remain controversial after it becomes law in January 2016. Proponents are convinced of the legality and humanity of the new legislation. Opponents, including the Catholic Church, believe it will set the stage for abuse by those least able to speak for themselves—a valid concern in a healthcare system that is increasingly overwhelmed.

A recent article estimated that the Act will affect 1 in 10 people with a terminal illness—a relatively small group because of its strict requirements:

1. A person must prove mental capacity to be able to make this decision.
2. He/she must have a terminal illness that will, by medical judgment, result in death in 6 months.
3. The patient must also make 3 requests to a doctor; 1 must be in writing, 2 oral. The oral requests must be 15 days apart.

These patients are identifying their own incapacity

Clearly, these requirements show that a patient requesting that a physician assist in his or her death is not doing it casually. In each case, the patient has been diagnosed with a terminal illness and is likely facing great pain and suffering. The patient is making this decision while he or she is still coherent and thinking clearly, submitting the request over a period of several weeks.   

The need to identify incapacity in Living Trusts

We all want to grow old gracefully and die peacefully in our sleep. Unfortunately, for most of us, that path is unlikely and the process will be uncertain. It is because of this uncertainty that you should be thinking about the need to define incapacity in your Living Trust. Your Successor Trustee should be given specific instructions on what should be done if you are no longer able to care for yourself.

1. Incapacity. How will incapacity be determined and who will determine it? Your oldest child? Your husband or a family doctor?
2. Assets. How should your assets be used during this period of incapacity? Will you have in-home care? Will you move in with your children and have them take care of you?
3. Outside the home. If staying in your home is not an option, what is your preference—moving across the country to be near your daughter? A large assisted-care facility with lots of activities or someplace small and personalized?
4. Care Manager. Do you need a designated care manager to evaluate the level of care and oversee your overall well-being, making sure that you’re getting to doctor appointments, taking your medications and eating properly?

Your Living Trust should address the issue of incapacity

While the new law will help a few, the number will be limited. If we live long enough, our bodies simply wear out, and the reality is that most of us are going to experience some period of incapacity before we die. Thanks to the miracles of modern medicine, we are living longer, yet the statistics show that an estimated 80% of us will experience some kind of dementia. While we may not have control over our physical or mental health, we can control how our assets will be used to care for us. Now is the time to plan for this.

Have you defined the issue of incapacity in your Living Trust? It may be time to update your Trust for other life events as well—purchase of property, birth or death of a loved one or a major investment. Stop in to one of our Bay Area offices to update your Living Trust soon.