COVID, Ventilators and Your Healthcare Directive

In April, 91-year old Minna Buck revised her Advance Healthcare Directive. She doesn’t want to be intubated if she becomes infected with COVID. Ms. Buck has done her research and knows she doesn’t want any part of intubation. She knows that even if she survived, the recovery would leave her weak and disoriented, a burden on others, with a negligible quality of life.

No Intubation for Ms. Buck

Buck is clearly in the high-risk group. “No intubation,” she wrote in large letters on the form, making sure to include the date and her initials. “I don’t want to put everybody through the anguish,” said Buck.

Ventilators represent a loss of personal control

For older adults contemplating what might happen to them during this pandemic, ventilators represent a terrifying lack of personal control. Ventilators pump oxygen into a patient’s body while he or she lies in bed, typically sedated, with a breathing tube snaked down the windpipe. This can be the greatest fear: helplessly being hooked to a machine with the end of life looming. Yet for others, there is the hope that the machine might pull them back from the brink, giving them another shot at life.

Who will care for these patients? Where?

“It’s a very long, uphill battle to recovery,” and many older patients may never regain full functioning, said Dr. Negin Hajizadeh, an associate professor of critical care medicine at the School of Medicine at Hofstra/Northwell on New York’s Long Island. “Who’s going to take care of these patients after a prolonged ventilator course ― and where?”

Quality of life issues motivated one single woman to change her healthcare directive

In St. Paul, Minnesota, Joyce Edwards is 61, unmarried and lives alone. In late April, Edwards revised her Advance Healthcare Directive to specify that “for COVID-19, I do not want to be placed on a ventilator. I have to think about what the quality of my life is going to be. Could I live independently and take care of myself — the things I value the most? There’s no spouse or adult children to take care of me. Who would step into the breach and look after me while I’m in recovery?”

End of life care discussions: Think about what’s important to you

COVID has created some immediacy around end of life decision-making. Experts advise older adults to discuss what’s most important to them–independence, time with family, mobility, living as long as possible. Think about what represents a good quality of life—this will provide context for the ventilator decision. For Minna Buck, quality of life and independence outweighed living as along as possible. At 91, she has lived a long, full life.

During this health crisis, many are feeling an urgency to create a Living Trust 

As the COVID crisis drags on, more clients are scheduling appointments to create or update their Living Trusts. Our Trust package includes a Pour Over Will, and for those families with children under 18, it means that they can name a Guardian. Creating a Trust helps provide some peace of mind during these uncertain times. Best of all, we guide you through it and we prepare the legal documents.

Our Trust package includes a Will, Power of Attorney, an Advance Healthcare Directive and Incapacity Planning. At California Document Preparers, for most of our services, we charge one flat fee. We’re helpful, compassionate and affordable.

Schedule an appointment today

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We service the entire East Bay and North Bay areas

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New Healthcare Directive: Facing Dementia with a Plan

Dr. Barak Gaster is a Seattle internist who spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to create a dementia-specific advance directive. The document maps out the stages of dementia: mild, moderate and severe; it asks patients to specify which medical interventions they would want at each phase of the illness.

Identifying end-of-life care while still able to make decisions

“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” said Dr. Gaster. “At what point would they not want medical interventions to keep them alive longer?” Dr. Gaster wants his patients to respond to his directive before the disease has left them unable to make choices.

Ann Vandervelde, 71, is an abstract painter who was familiar with dementia. Her father had died of dementia and, as a hospice volunteer, she had spent time with dementia patients. She also was well aware of the family conflicts that can accompany critical medical decisions.

Not all experts are convinced that another directive is needed

But as Dr. Gaster and his co-authors argue in the JAMA, the current directive doesn’t address dementia and the disease’s progressive nature. Dementia progresses slowly, and in the early stages, patients can still enjoy a high quality of life and are able to make decisions about their care.

An estimated 20%-30% of us will at some point develop dementia

Last year, the journal Demography estimated that for someone born in 1940, the lifetime risk of having some form of dementia at age 70 was 30.8% for men and 37% percent for women. Dr. Gaster has offered his directive to patients qualifying for Medicare. Not surprisingly, those families who have experienced dementia are most responsive to the more comprehensive directive.

Highlights of Dr. Gaster’s directive include the following:

• For each stage of dementia, the patient can choose among four options, from full efforts to prolong life to comfort care only.
• Patients can opt for lifesaving treatments.
• They can opt to receive care where they live but avoid hospitalization, which can be frightening for a dementia patient.

Doctors and nurses are concerned that these end-of-life documents get filed away—it’s not uncommon for documents to be unavailable when it’s time to make critical decisions.

Healthcare professionals are trained to save lives—not allow patients to die

One of the problems with directives is that healthcare professionals are trained to save lives, not necessarily to administer palliative care that will allow their patients to die. It’s not uncommon for family members to ignore the wishes of their loved ones and keep someone alive against their documented wishes.

The takeaway: Families need to get involved

We need to be discussing quality of life issues with our families and healthcare teams–identifying what we find acceptable or unacceptable, what interventions we agree to. The decisions should be documented and shared with family, friends and doctors. For Ann Vandervelde, knowing that she had carefully detailed her end-of-life wishes and shared them with her family gave her a sense of calm. She trusted that the people she loved and trusted would carry out her final wishes.

A Power of Attorney and an Advanced Healthcare Directive are included in our Living Trust package. Contact California Document Preparers at one of our three Bay Area offices today to schedule an appointment to create or update your Trust. Our dedicated team is helpful, compassionate and affordable.