Planning ahead can ease the pain of life-or-death decisions

It's a situation that no one wants to encounter, but that many families will face: how to assist an ill or injured loved one when it's time to make critical health care decisions. If a spouse, sibling or grandparent becomes unable to speak for themselves, do you know what kind of interventions they would want from doctors and hospital staff?

This is where having an advance health care directive can make life -- and death -- a little easier.

Dr. Christopher Piromalli is the director of palliative care at Alaska Native Tribal Health Consortium in Anchorage. He and his colleagues do the difficult, but important, work of caring for patients with serious illnesses, especially patients with incurable cancers. He understands the impact of having advance health care directives in place.

"They can absolutely help reduce the stress of the patient as well as their loved ones," he said. "Advance directives are written by someone who is making their own medical choices based on their own goals, values and preferences."

In addition to ensuring a patient's wishes are known, he added, an advance directive (also known as a "living will") can relieve pressure on loved ones who would otherwise be left to make critical decisions on their own.

"If there ever comes a point when their chosen health care agent needs to step in as a medical decision maker, the burden is not on the health care agent to make decisions for the patient, because instructions for these decisions have already been made," Piromalli said.

That was the motivating factor for Anchorage resident Patricia Partnow, who worked with an estate planner to create her advance health care directive in 2008.

"I wanted to make it easier for my kids when I die," she said.

While advance directives are often associated with end-of-life care, Piromalli is quick to point out that there are times when they are used to determine care for patients with curable illnesses as well.

"I think that being prepared is making your wishes known on how you want to live -- what is acceptable and not acceptable during a serious illness or injury," he said.

Understanding advance directives

In Alaska, an advance health care directive has two parts, explained Paula Jacobson, a practicing Anchorage lawyer who is also a registered nurse.

Part one: a durable power of attorney. "(This is) where you name an individual to make health care decisions for you if you cannot make those decisions yourself," Jacobson said. "Your agent then has the authority to make all health care decisions for you that you could legally make yourself."

Of course, having a detailed discussion to make your specific health care wishes known to your agent is imperative -- whether you would want to be resuscitated, have a feeding tube, receive oxygen. You'll also want to be sure that your agent is willing to carry out these wishes when times are tough. They must be able to explain your choices to the rest of those gathered who may not understand why their loved one is not going to be resuscitated.

"For some people, it would not be acceptable to endure prolonged life support for the chance of getting better," said Piromalli. "Some people will choose these interventions even with the chance that this may mean that they will no longer be able to do the things that they used to do or they may be unable to do the things that are important to them. Again, these discussions are about how we want to live and how we want to be treated."

For Partnow, naming the health care agent took careful thought.

"I've got two kids and I figured it would be one of them," she said. "I thought about who would feel most comfortable making the decision between the two of them."

Part two is an outline of your health care wishes to the extent allowable by law.

"You are able to give instructions regarding the provision or withholding of artificial nutrition, hydration and pain relief medication, among other things," said Jacobson. Like most states in the U.S., she added, "Alaska law does not allow you to authorize mercy killing, assisted suicide or euthanasia."

An attorney can certainly help to prepare this document, but individuals can also obtain the document from Alaska Legal Services Corp.'s Alaska Law Help website (alaskalawhelp.org) and prepare it for themselves. Talk to your primary health care provider for advice as well. The completed document needs to be signed by two witnesses or notarized.

Jacobson said the issue of whether or not an advance health care directive is legally binding is complicated, but in general, most health care providers will act in accordance with the agent's instructions. Providers can, however, deviate from a directive if they feel an agent's wishes are medically inappropriate or morally objectionable -- say, in a situation where there is obvious elder abuse or unethical decisions to stop medical care when the patient's life is clearly not yet at the point of death.

Planning for ‘compassionate care’ at any age

"Advance care planning is not about being sick, but rather being prepared," Piromalli said. "It is something that we all should be thinking about."

Under Alaska law, anyone age 18 or older can execute an advance health care directive -- and end-of-life issues are not a consideration only for elders, said Anchorage attorney Karl Kaufman.

"Young people should have an advance directive for the same reasons an older person would," Kaufman said. Sudden illness or unexpected injuries can have catastrophic effects even for the young and healthy.

Whether or not they use the exact term, "compassionate care" is typically the goal -- for families and for providers -- for patients with a serious illness.

Compassionate health care takes the whole person into consideration -- physical, emotional, mental, spiritual -- as well the well-being of the struggling family members. "Advance care planning is critical in providing high quality palliative care," Piromalli said.

"Advance care planning is not about a form -- it is about a conversation," he added. "Through meaningful conversations, patients start to recognize that advance directives can help to ensure that their health care goals are honored."

This story was sponsored by Alaska Native Tribal Health Consortium, a nonprofit Tribal health organization designed to meet the unique health needs of more than 150,000 Alaska Native and American Indian people living in Alaska.?

This article was produced by the special content department of Alaska Dispatch News in collaboration with ANTHC. Contact the editor, Jamie Gonzales, at jgonzales@alaskadispatch.com. The ADN newsroom was not involved in its production.