Latasha is a 32-year-old mother of two in great health, but with a family history of cancer. Tom, age 49, saw his best friend die six years ago after spending two weeks in a coma. Mimi, in her early 50s, witnessed both her parents’ mental deterioration due to Alzheimer’s disease.
In the prime of their lives, people like these examples are making advance care plans, not because they’re sick, but because they know what could happen.
“Advance care planning involves thinking and planning for the types of care you’d want in specific medical situations,” said Dr. Kelsey Terland of Samaritan Palliative Care. “It’s best to do this planning when you are in a state of wellness. Then, you can review and make changes to your plan as you age, or as your health changes.”
What Goes Into Advance Care Planning?
Think about your current life situation – what do you value, what makes life worth living for you? Maybe it’s your independence, your creative abilities, or the relationships you have with family and friends. Imagine if these values were compromised – if, for example, you became fully dependent on others or didn’t recognize the people you love. What would you want for your life then?
In advance care planning, these are the types of questions that shape your decisions for the future.
“At its core, advance care planning is about defining what is acceptable quality of life for yourself,” said Dr. Terland. “Everyone is different. Your unique values, priorities, and preferences will influence how you define this. As a medical professional, once I understand these wishes, I can help by making values-based medical recommendations which can help you or your family with medical decision making,” explained Dr. Terland.
As you reflect on what you’d like in the event of a serious medical crisis, you would want to complete an Advance Directive. In this document, you name a surrogate decision-maker -- someone you give the legal power to speak for you only when you cannot. The Advance Directive also helps guide your care if you were ever hospitalized and unable to make critical decisions.
Anyone 18 years or older can have an Advance Directive.
Why It’s Helpful
While it’s impossible to know what could happen 10, 20 or 30 years from now in terms of your health, there are certain circumstances that make having an Advance Directive useful, Dr. Terland noted.
“It is not uncommon for patients in the hospital to be so sick that they become confused, or perhaps you’ve had a stroke, or an accident, or are in the advanced stages of dementia. In circumstances like these, when your illness has taken away your ability to speak or to understand complex issues and make decisions about them, this guide is incredibly helpful,” said Dr. Terland. “Your family will not have to decide for you because your wishes have already been spelled out.”
Without the document, your loved ones may need to decide whether to have machines breathe for you or tubes feeding you, whether you’d want blood transfusions, emergency surgeries or kidney dialysis, and whether you’d want these measures for a time-limited trial, or to prolong your life indefinitely.
Chaplain Wes Sedlacek of Samaritan Health Services has witnessed such agonizing family decisions.
“I’ve seen so many families in the critical care unit who are having to deal with the illness of their loved one while also struggling to make some very difficult decisions about their care. It just adds to the crisis for them,” he said.
Determine Who Speaks for You
To begin your care plan, start by naming a surrogate decision-maker. Referred to as your health care representative, this person will be your voice, ensuring that your medical team and family know what you want.
“This person should be selfless and trustworthy,” said Sedlacek. “By selfless, I mean they won’t be thinking about themselves, but you. And by trustworthy, you’ll want to trust them to advocate for your wishes in what could be a very challenging and conflicting time.”
It’s important to remember that your health care representative does not make the decisions, Sedlacek stressed.
“Sometimes, people will feel they are burdening their surrogate with heavy decisions – but you are telling that person the decisions you’ve already made. That person is only speaking for you,” he noted.
Your representative does not need to be a family member.
“I’ve had people tell me they don’t want their family members in a position of carrying out their decisions,” Sedlacek said. “One woman told me she felt her daughter would be too emotional, so she named her son-in-law. Another person I know named their veterinarian, who they’d gotten to know and could rely on; another person, named their favorite bank teller. It can be anyone who shares your values.”
Complete the Document
In Oregon, the Advance Directive includes a booklet and worksheet that prompt reflection about possible medical situations and what you would want for your care in those examples. For instance, would you want medical treatments to prolong life if you had a terminal illness? Would you prefer to die in a hospital or at home? Do you have religious beliefs you’d want honored?
“Obviously, the document cannot outline every possible medical scenario,” said Dr. Terland. “More importantly, you are defining what you value about life and how those values could be applied to medical decisions,” said Dr. Terland.
Once completed, the document must be signed by two witnesses or a notary. Then, you and your named surrogate should each have a copy. Your primary care provider can also add the document to your medical chart.
“It’s also important that you tell family members where you keep your directive so it can be accessed if you are hospitalized,” said Dr. Terland.
Revise, As Necessary
Your Advance Directive can be changed at any time.
“Some worry that if they fill out the document now, it will limit their care today, but it won’t,” Dr. Terland explained. “The Directive is for specific situations and is not a ‘Do-Not-Resuscitate’ order, which is a separate document.”
She recommended reviewing your Advance Directive periodically.
“You should review it every several years or every time your health changes,” she noted. “If your directive is 15 years old and you are newly diagnosed with a serious illness, that’s the time to look it over again and revise if you choose.”
Do You Also Need a POLST?
If you wish to have a “Do-Not-Resuscitate” order, the document in Oregon is called a Portable Orders for Life-Sustaining Treatment or POLST. Completely separate from the Advance Directive, a POLST is filled out by your care team, not you.
“This document is done nearer the end of life,” said Sedlacek, “when a person has a severe chronic or terminal illness, perhaps within the last 12 months of life, or if they wanted to put limitations on medical interventions that would normally be provided.”
After a conversation with your health care team, they can complete a POLST for you to declare whether you prefer a natural death at the end of life or if you wish to have resuscitation attempted when you are not breathing and have no pulse.
“There are common misperceptions about the outcomes of resuscitation,” said Dr. Terland. “In patients who face advanced illness, resuscitation is often not successful and when it is, people are often left with far greater medical problems than they faced prior to the event. This can compromise acceptable quality of life for many people.
“Your medical team can also help you to determine what type of medical interventions you would want along your journey with serious illness, ranging from comfort measures only to full treatment,” she added.
Filling out a POLST happens as part of a conversation with your medical provider.
“You really need to ask your health care provider questions to clearly understand how the document works,” Sedlacek said.
Once your medical provider signs the POLST, it is immediately in effect and entered into a statewide database. All medical professionals, including hospital staff, paramedics and nursing home staff, can access this database to know your treatment preferences near death.
Most Importantly, Talk With Loved Ones
Sedlacek stressed that conversations with loved ones about your wishes are critical.
“If you do nothing else, having conversations with family about what you want is the most important thing to do,” Sedlacek said. “Even if nothing is written down, your family can draw on that conversation to inform their decisions.”
Ultimately, Sedlacek noted, the directive can relieve stress on loved ones.
“An Advance Directive is a gift to your family members,” he said. “It gives them more information about what you are thinking, and it takes the burden off them to decide for you. It’s a good thing to do.”
Learn more about Advance Directives at classes held regularly at Samaritan locations.
Kelsey Terland, MD, is a specialist with Samaritan Palliative Care, a multidisciplinary team supporting patients with serious illness. She can be reached at 541-812-5020.
Wes Sedlacek is chaplain at Samaritan Lebanon Community Hospital and Samaritan Albany General Hospital, and a member of the palliative care team. He helps patients complete their Advance Directives by appointment at Samaritan Park Street Clinic and Samaritan Sweet Home Family Medicine. Ask your physician for a referral or call 541-451-7200 or 541-451-6250.