The way Julianne Dickelman tells it, people make plans for their lives. They plan for a birth, marriage and retirement. But people aren't so good when it comes to their life's end.
"We plan for everything in our lives except for this," she says. "We have birth plans, but we don't really have death plans."
Dickelman is project manager for a new effort in Whatcom County called End-of-Life Choices Advance Care Planning Initiative. Its goal is to help county residents make clear what kind of end-of-life medical care they want, or don't want, via a written plan they make now, in case they can't communicate their wishes later.
Doing so saves stress and confusion for family, friends and medical providers, as well as unnecessary suffering for patients in an era when medical technology allows doctors to prolong life but not quality of life.
"A lot of patients weren't dying in accordance with their wishes," says Dr. Margaret Jacobson, a co-director of Whatcom Hospice who was the force behind the initiative in Whatcom County.
That's not just an issue in Whatcom County, as numerous studies have shown, but an effort is underway to change it here.
"We are focused on making sure that patients make their wishes known," Jacobson says.
People of all ages, even young people, should create advance directives, officials say.
Medical directives, as well as wills and funeral services, are among the arrangements people should make while they are capable of doing so. Still, reluctance remains.
"For some people that's not how they like to spend a sunny spring afternoon," says Bellingham attorney Andrew Heinz. "The challenge for some people is having the family conversation."
Here are arrangements people should make now, and retool over time.
People working to get more Whatcom residents to draft advance directives for medical care are using elements of a program in La Crosse, Wis., called Respecting Choices. Launched in 1991 by health organizations, the communitywide project in La Crosse strove to get people talking and planning with their families and doctors. Since then, more than 80 communities and groups across the country have launched Respecting Choices efforts.
Typically, 25 to 30 percent of people in a community have advance directives. In La Crosse, advance directives were written by 85 percent of those who died. Their families and doctors seemed to know what their care preferences were and typically followed them, according to information on the Respecting Choices website.
"Let's normalize this conversation," says Dickelman, who is with Whatcom Alliance for Health Advancement, the nonprofit group leading the local effort.
Toward that end, WAHA has launched free workshops to provide key information.
How to choose someone to be your health care agent. That's the person who speaks for you when you can't because you're incapacitated. An agent is designated in a form called a durable power of attorney for health care.
"You have to look at whether this person is able to follow your wishes and really understands your wishes," Dickelman says, noting the person can be family member or friend and must be someone who can handle stress.
How to talk to loved ones and doctors. People need to talk about their preferences for end-of-life care and about filling out a form called a health care directive, or a living will. That directive is the form people use to explain the medical care they want, or don't want, at the end of life.
In the case of a health care agent, topics to be clear about include life support and what people understand about comfort care, palliative care and hospice care.
"It's a lot of unpacking of that story," Dickelman says. "It's a lifetime conversation. Depending on your health and age, you should revisit it in some fashion."
How to complete and file advance directive paperwork. To ensure one's wishes are known, people should make several copies of their health care directive, keeping one at home and giving a copy to their doctor, health care provider, hospital and nursing home.
"Many people have documents, but it's in a drawer," Dickelman says.
Another important document is a physician orders for life-sustaining treatment, commonly called a POLST. The form is for people who are nearing the end of their life because of age or advanced illness, whereas an advance directive should be filled out by all adults.
A POLST is a doctor's order that describes what kind of life-sustaining treatment is wanted, or not wanted. It's portable, in that it goes with a patient from home to hospital to nursing home.
For people who are at home, the POLST should be visible, on the refrigerator for example, in case paramedics are called. The POLST might stipulate "no CPR" or "no electrical shocks to the heart," Dickelman explains. If there isn't such a form, emergency medical personnel must, by law, perform life-sustaining treatments.
Wills and powers of attorney are standard documents that Heinz, an estate planning and probate lawyer in Bellingham, prepares when it comes to end-of-life decisions:
A will lays out the disposition of your property and how your assets will be administered.
There are two parts to the powers of attorney. One allows someone else to make decisions about your finances and property in the event you can't because of mental or physical disability. That's known as the general durable power of attorney.
The second one is the health care power of attorney, which is accompanied by an advance directive and a physician orders for life-sustaining treatment. Those are the same documents the WAHA effort focuses on, and the health nonprofit says that it's not competing with people who prefer to use their attorney to draw up such forms.
Once you've filled out the documents, keep your paperwork in a safe place that family or friends have access to following your death. Heinz suggests a fireproof safe.
More people are planning for their funerals to reduce strain on their families during a difficult time. The Federal Trade Commission offers advice for people who want to do so. Tips include:
Shop in advance. That gives you time to compare prices and discuss your wishes with family.
Shop around. Compare prices from at least two funeral homes. Keep in mind that you can provide your own casket or urn that you bought elsewhere.
Decide where you want to be buried, entombed, or scattered after cremation. That way your family isn't making the decision between your death and burial, when they might be rushed to buy a cemetery plot or grave, for example.
Ask for a written list of prices for products and services. Funeral homes are required to provide such lists. You can get a list after you decide what you want, but before you pay.
Review your decisions every few years. Make sure your family knows your wishes, including where you have filed documents for your funeral.
Whatcom Alliance for Health Advancement will hold free community workshops in July about making end-of-life choices:
Tuesday, July 16: 5:30 to 7 p.m., St. Luke's Community Health Education Center, 3333 Squalicum Parkway.
Tuesday, July 23: 4:30 to 6:30 p.m. drop-in at Whatcom Alliance for Health Advancement, 800 E. Chestnut St., lower level. People can visit even if they have already attended a workshop.
Friday, July 26: 10 a.m. to 4 p.m., Project Homeless Connect, Bellingham High School, 2020 Cornwall Ave.
Details: 360-788-6526, firstname.lastname@example.org or whatcomalliance.org. Other workshops are pending; check the website for updates.
--Go to whatcomalliance.org to explore advance planning topics. Select "end of life choices" under "services" on the home page.
--Go to respectingchoices.org to learn how health groups in La Crosse, Wis., launched a community effort to help residents complete end-of-life plans.
--Go to consumer.ftc.gov and type "funerals" into the search window to find consumer information about funerals from the Federal Trade Commission.
--Go to wsfda.org and click on "Consumer Information" under "Resources" to find a consumer brochure from the Washington State Funeral Directors Association.
Reach Kie Relyea at 360-715-2234 or email@example.com.