Planning for end-of-life care

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By GINNY SUGIMOTO

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When it comes to planning for end-of-life health care, the first impulse for many people is to avoid the topic. End of life is something many of us would prefer not to think about. But considering your wishes, and documenting them, is one of the most important things you can do.

That’s partly because we all have a different idea of what constitutes the best amount and type of care, and where we want to receive that care. For example, my idea of a good death is one that is not preceded by too many intensive medical interventions. I am influenced in that decision by my work as a doctor, and by my extensive experience with elder care.

Others may want the option of more procedures. Some people want to die at home if possible, while others are comfortable with hospital or hospice care outside the home. People make these decisions based on many factors, including their own desires and beliefs about death, what they think will be easiest for their loved ones, financial circumstances and religious beliefs.

Unfortunately, far too many people don’t make these decisions at all — not even informally. They don’t share their wishes with loved ones. According to The Conversation Project, an organization dedicated to helping people talk about end-of-life care, 90 percent of people say that talking to their loved ones about end-of-life care is important, but only 27 percent have actually done so. As a result, family members often must make multiple health decisions for their seriously ill loved ones without guidance. My husband and I are both doctors, and we’ve seen elderly people — who are unable to make their own decisions — undergo significant, invasive procedures because whoever has control over their health care can’t accept that their loved one is dying, or they fear making the wrong decision.

To avoid such an outcome, I strongly recommend that you make decisions now — whatever your age — and put them in writing in the form of advance directives. These are legal documents that outline your wishes for end-of-life care. Make sure to discuss your wishes with your loved ones and your doctor.

DOCUMENTING YOUR WISHES

The term “advance directives” refers to three documents that can help make your end-of-life choices clear and legally actionable.

1. Durable Medical Power of Attorney for Health Care: This gives someone of your choosing the power to make medical decisions for you if you are too sick to make them yourself. This person must be over age 18 and available and willing to act on your behalf in healthcare-related matters. It is important to have end-of life conversations with this person. (A durable power of attorney for finances is a separate document and can be given to the same or a different person).

2. Living Will or Directive to Physicians: This document states a person’s decision to refuse life-sustaining medical treatment if that person has a terminal illness or injury that leaves him or her permanently unconscious. The directive lets your doctors withhold or stop life-sustaining treatment. Living wills do not apply when medical conditions are not life-threatening. Living wills tend to be very simple, which can limit their usefulness in complicated medical situations.

3. The Washington State Physician Orders for Life Sustaining Treatment (POLST) form is important for residents of Washington state who have an advanced, life-limiting illness and want to limit health care interventions. It’s usually supplied by your medical provider and completed during an office visit. You and your doctor, nurse practitioner, or physician-assistant-certified must sign the document after making specific choices about cardiac resuscitation, respiratory support, use of antibiotics and use of artificially-provided nutrition. The form then constitutes medical orders that guide your medical team in life and death situations. It becomes effective immediately, but if you change your mind about the decisions you’ve made, you can tear it up and it is no longer legal. If you live at home, post this form where paramedics can find it easily such as on the front of the refrigerator, back of the bedroom door, on a bedside table or in a medicine cabinet.

I’ve spoken with patients about why they put off creating these documents. Most often, they simply haven’t set aside time. Sometimes, they fear that signing them means they won’t get treatment when they want it. This is not true. If you state that your goal is to live as long as possible, you will get every intervention. People also worry that if they give someone durable power of attorney for health care, they will immediately lose control of their choices. But this power of attorney only activates if you are unable to speak for yourself. In reality, you lose control when you don’t express your wishes and leave all the decisions to others.

I was recently caring for an elderly patient with a new diagnosis of cancer. I looked back over several years of office visits and saw that we had had three conversations on the topic of advanced directives but he was never ready to make those decisions. I knew my patient could become very ill in the weeks ahead, so we started the conversation anew. We completed the POLST form, and he and his son agreed that they would complete the other documents that week. It felt good to have an honest conversation about my patient’s fears and desires, and to know that his son and medical providers will be able to honor his wishes.

I believe that most people in this country don’t end their lives in the way they would choose. That situation could be very different if we all take the time to share our preferences with our doctors and the important people in our lives.

RESOURCES

Most people aren’t aware of the options for end-of-life care. These resources are helpful in beginning a conversation and making choices.

The Conversation Project has a free starter kit, downloadable from its website, that can help you gather your thoughts and consider how best to have this conversation with loved ones. Find it at theconversationproject.org.

The Washington State Medical Association’s “Know Your Choices, Ask Your Doctor” campaign can provide both forms and guidance. Go to wsma.org or call 1-800-552-0612.

The American Bar Association offers a starter kit for talking about these issues. Go to americanbar.org and enter “Consumer Tool Kit for Health Care Advance Planning” in the search box.

Hospice of Kitsap County offers a Living Will resource called Five Wishes. Order copies at hospicekc.org.

Your doctor’s office is also an excellent place to ask for more information about advance directives.

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