National Healthcare Decisions Day is a day dedicated to educating and empowering people to take an initiative in planning for unforeseen health outcomes through advance care planning.
Advance care planning is a formal process focused on making your wishes known on how you would like to be cared for by your healthcare providers, and ensuring that the providers respect those wishes, whatever they may be. This also removes the guess work from friends and family who are often tasked with making medical decisions during such stressful times.
Dr. Margaret Elizondo is a board-certified physician in family medicine, hospice and palliative care at Sharp HospiceCare, and lives in San Diego. She said California’s Advanced Directive is a combination of what once was called a Living Will, where you can list in advance what you would or would not want to be done in certain circumstances.
“Typically, it would be, ‘I do not want to be kept alive on a ventilator or with a feeding tube. If I am not able to be aware and interact with my family and friends anymore,’” she said. “Unfortunately, medicine is so complicated, and there are so many things that can happen to us, and different ways that our bodies can be kept alive these days by modern medicine, it is hard to predict what might happen and what you would want under certain circumstances. Our Advanced Directive in California includes the durable power of attorney for healthcare. So, it is both a Living Will type document, and it also lets you assign other people to make decisions about your medical treatments if you are not able to speak for yourself.”
This is a powerful document, said Elizondo, but unfortunately, many people have only done a “boilerplate” verbiage in a standard advanced directive, which covers limited circumstances people find themselves in such as an irreversible coma and do not want to be kept alive with artificial means.
“So many times, there are things that fall short of an irreversible coma where people would not want to proceed with more medical treatments,” she said. “The idea is that this agent to make your healthcare decisions would be able to step in and make those decisions for you if you cannot do it. You also have the option to write-in on your advanced directive and have an attorney or paralegal make a document for you that goes beyond the boilerplate language.”
Elizondo said this includes things like having metastatic cancer and not wanting further treatment but wanting hospice care. She said making more specific information available makes it much easier for people who might have to take care of them later in life, as they would know what their end of life wishes are.
“Also, when you assign an agent to make decisions for you, you must make sure that person really can make the decisions that you would want,” she said. “That means that you would have to talk to them about what you would want or not want. You cannot assume that they know.”
Elizondo said many people have great conversations. Like Death Cafes, where people talk about their experience with death, their own expectation of what their death might look like, what their experiences have been with other people who have died. Things they did and did not like about the medical system, in terms of its default effort to keep people alive at all costs.
“The more conversations you have had with the more people before you have a crisis, the better your chances of getting the type of end-of-life care that you would want,” she said.
Elizondo said you can set your Advanced Directive completely on your own without an attorney or paralegal. The form can be downloaded from the Internet. It needs to be witnessed by two people not making the decisions for you, or not inheriting your estate. But she said you can choose anyone, friends, neighbors, to witness your signature. She said this process is easy without a lot of hassle.
“Choosing who should make decisions for you should not always be your spouse or your children,” she said. “If people are honest with themselves, sometimes their spouse is not the one who will say, ‘Let them go.’ They might be doing things to them to the bitter end that they do not want done. So, you have to be very careful about who you choose. You might want to choose a friend or sibling instead.”
Elizondo said the other document people talk about are Physician Orders for Life-Sustaining Treatment, which is printed on pink cardboard-like paper so it can go with patients wherever they may go. From home to hospital. From nursing home to rehabilitation, and back home again.
“Realistically it is hard to get those papers with the patients when they need them in their crises,” she said.
Elizondo said we have a healthcare industrial complex like we have a military industrial complex that keeps itself going by making people feel that they should fight to stay alive at all costs and fear death at all costs.
“Our medical system and our society promote that,” she said.
Elizondo’s mother just turned 98 in February. She is still able to live at home with help from family. A couple of years ago she had a seizure at a friend’s home. By the time Elizondo got there, the paramedics were there and wanted to take her mother to the hospital, but she knew her mother’s wishes.
“She has been telling me for decades now that she is ready to go at any time and does not want any interventions,” she said. “By the time I was called and got up there, the paramedics were already there and of course they wanted to take her to the hospital.”
Elizondo said she keeps her mother’s POLST form on her phone, told the paramedics her wishes, and eventually they took her to her own home and put her in her own bed. She knew that whatever the hospital might find, her mother would not want any treatment or invasive testing.
Elizondo said if she was unconscious in the morning, she would call hospice care, and if she had returned to normal, she would do nothing. The next morning, her mother was back to the way she was before the seizure.
Elizondo said the most important thing, beyond the documents, is to talk to your family and friends and let them know what your final wishes are. She said most people are in hospice for only a few weeks because people delay for so long to get into hospice because they are working so hard to fix things.
“Even with no document, if you have somebody that can verbally speak for you and let your wishes be known, that makes so much difference,” she said. “There are some physicians that want permission to let someone go but they do not feel like they can do it unless someone else is really advocating for the patient. Unfortunately, often what the patients and family members are thinking is that the doctor will tell them if there is a problem here, and really no hope and should go on to hospice. Each one is expecting the other to start the conversation and deal with reality first. It means that so many times, there are missed opportunities to have comfort care in the last months of one’s life.”