Despite the inevitability of death, many find it difficult to talk about the kind of ending they would prefer if given the choice.
Should powerful drugs, major surgeries, ventilators or feeding tubes be part of the process?
How much money should be spent to extend life, even if only for a few days or months, or if the potential complications of survival could be severe?
Who will make such decisions on your behalf if dementia or another circumstance makes you incapable of participating in choices about your own care?
Such weighty questions explain why more than 75 percent of patients who show up in an emergency room with a serious illness have no written guidelines in place about how their care should be administered, said Dr. James Fitzpatrick, vice president of medical affairs at Kenmore Mercy Hospital.
"When that happens, you're left with a doctor or practitioner who doesn't know you and everybody is scrambling — so it's best to have these advance directive discussions well in advance,” said Fitzpatrick, who also serves as director of the palliative care program at the Town of Tonawanda hospital.
When is the best time to tackle these tough questions?
April 16 is National Healthcare Decisions Day, a marker established to encourage everyone 18 and older to plan for a health crisis — and express their wishes in writing. But any day works.
Experience tells health professionals the deliberations will be challenging. It’s why 90 percent of adults who live in upstate New York have heard the term “health care proxy,” but only 40 percent have completed one, said Dr. Patricia Bomba, vice president of geriatrics at Univera Healthcare.
“It always seems too early, until it’s too late,” Bomba said. “Advance care planning gives you peace of mind in knowing that your wishes for care will be represented, and the conversations it stimulates also give your loved ones the confidence they’ll need to be able to speak for you.”
She and Fitzpatrick advised adults to talk with their health care providers about filling out the following important advance directive documents.
Health care proxy
"First and foremost, this is the most important thing," Fitzpatrick said. You can choose a trusted friend or family member to make medical decisions on your behalf should you become incapacitated for traumatic reasons. You want to pick someone who will know – and carry out – your wishes in a critical time.
A lawyer generally will prepare this medical portion of a last will and testament. "They'll address some of the issues with advance directives, but they're usually very generic and non-specific, and often not relevant for a current medical condition," Fitzpatrick said. These often are completed when someone is in good health and hasn’t anticipated all that goes into a cancer diagnosis or serious chronic condition. In those cases, it will cost time and money to update.
A Medical Orders for Life-Sustaining Treatment form helps individuals faced with a health crisis address the limitations of a health care proxy or living will. "It’s a real important document — especially when the health care proxy doesn't follow your wishes,” Fitzpatrick said. “Any patient over 65 or who has any kind of chronic medical condition that's getting more serious should complete a MOLST form."
The form can include Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders, direct health providers about whether a feeding tube or ventilator should be used as part of life-sustaining treatment, and whether a hospital transport need not be undertaken under certain circumstances.
The MOLST can be updated anytime, particularly when there's a big change in a medical condition or someone gets admitted to the hospital, Fitzpatrick said. It becomes part of an electronic medical record. Still, he and Bomba said, the completed hot pink-colored form, along with a health care proxy, should be readily available in case of emergency, and taken on vacations and during trips out of town, especially by those with chronic conditions. Health providers also should be told the forms have been completed during every doctor, emergency room and hospital visit.
Fitzpatrick has spent the bulk of his 40-year medical career working in emergency, intensive and palliative care settings. He has seen how families prepared and unprepared for death try to navigate such an inevitable crisis.
"In the ICU, I used to spend as much time talking patients out of doing stuff than doing stuff — because often the outcome of heroic interventions isn't what patients think it's going to be," he said. "A real common scenario is you've got family who have been taking care of the patient here in town and then a sister from California comes in and tries to go against a patient's wishes, even sometimes when they have been documented …
“A prepared family is able to deal with the situation much better, know that dad would have wanted this and wouldn't have wanted that.”
The pain of loss remains, he said, but a dying loved one can provide at least some relief by having uncomfortable conversations — and completed advance directives — well in advance.
“A family, if they didn't know a loved one's wishes, will have a lot of pain when it comes time to take a patient off life support," Fitzpatrick said. "It's much easier to withhold treatment up front, if that's in line with a patient's wishes. Patients should be doing this for their family."
Death and decision-making
The following resources can provide advance directive forms and insights, including how to talk with loved ones. Forms are available online, although it’s best that a patient and their family complete them with guidance from a health care provider who can answer specific medical questions.
compassionandsupport.org: The site – fueled in large part by Dr. Patricia Bomba, vice president of geriatrics at Univera Healthcare – provides a comprehensive approach to end of life discussions and planning.
nhdd.org: The official site of National Health Care Decisions Day provides individual and community approaches to better end of life care and planning. Loaded with resources.
decidewny.org: A coalition of more than 50 regional health organizations – including The Center for Hospice & Palliative Care – provides information from local and national resources about advance care planning. You also may contact the center by email at email@example.com or call 901-0470.
health.ny.gov/healthaz: The Advance Directives tab on this New York State Department of Health webpage provides a primer on state laws and regulations about end of life planning and care at home, hospital and nursing homes.
theconversationproject.org: Pulitzer Prize-winning writer Ellen Goodman and a group of colleagues and concerned media, clergy, and medical professionals started this site in 2010 to share stories of “good deaths” and “hard deaths” within their own circle of loved ones. The website includes a free conversation starter kit.
Health pros share: Kenmore Mercy Hospital will have a table set up in the lobby from 8 a.m. to 2 p.m. Tuesday where medical professionals will be on hand to provide guidance, information and tools people can use to talk about their wishes with family, friends and health care providers. For more information, call 447-6211.
Bring Your Proxy to Dinner: 6 to 8 p.m. Monday, Orchard Park Presbyterian Church, 4369 S. Buffalo St., Orchard Park. Free, though preregistration is required by emailing firstname.lastname@example.org.
Share Your Healthcare Wishes: 10 to 11 a.m. Tuesday, Amherst Senior Center, 370 John James Audubon Parkway, Amherst; 6 to 7 p.m. Tuesday, Elderwood Assisted Living, 111 Ensminger Road, Town of Tonawanda.
Care for Those with Serious Illness: 1 p.m. Wednesday, South Pointe Senior Apartments, 4600 Southwestern Blvd., Hamburg