End-of-life care is critical to helping patients and their families feel as comfortable as possible while they get their plans in order and address spiritual issues.
That's why the Health is Primary(healthisprimary.org) campaign from Family Medicine for America's Health(fmahealth.org) recently focused on the message that primary care, and family medicine specifically, offers patients and their families the best support for their end-of-life care.
As part of its "mini-campaign," Health is Primary released tear sheets on providing comfort(healthisprimary.org) and advance directives(healthisprimary.org) for family physicians to provide their end-of-life patients.
The tear sheet on providing comfort offers information for patients on physical, mental and emotional comfort, and questions for them to ask their physicians and caregivers. It also addresses what spiritual preparations the patient and family might consider.
- The Health is Primary campaign from Family Medicine for America's Health recently highlighted how family medicine offers the best option for end-of-life care.
- As part of its "mini-campaign," Health is Primary released tear sheets on providing comfort and advance directives for family physicians to provide their end-of-life patients.
- The AAFP offers resources on working with end-of-life patients including policies and its advocacy efforts.
The tear sheet on advance directives defines a living will and a do not resuscitate order, and offers general advice on writing advance directives.
Family Physicians Discuss End-of-Life Approach
AAFP Speaker Javette Orgain, M.D., M.P.H., of Chicago, has been a leader in the hospice movement through her work with VITAS Healthcare in the city and as a champion for end-of-life care.
Orgain told AAFP News that family physicians are critical in this process as their scope of practice runs from birth to end of life. She also emphasized that the process of caring for patients at the end of their lives needs to be well integrated into the curriculum for family medicine students and residents.
It's also important for family physicians to address their own feelings about end-of-life care, including religious beliefs, in order to be able to have a good discussion with their patients, she said.
"We cannot tell patients when the end of life will come, but we can recommend the point at which certain treatments will no longer enhance their quality of life," Orgain said. "For example, if you are feeding someone who cannot absorb nutritional supplements and they are at risk of developing pneumonia from aspiration, what should you do next? It is a difficult decision to withdraw life support."
She pointed out that caregivers for end-of-life patients also need support. "Because of the intensity of the care required (and related stress), caregivers can suffer with their own health problems." She added that many times, caregivers may be elderly with their own chronic medical conditions, which can weaken their ability to provide end-of-life care.
Orgain recommended health care professionals heed their own advice and fill out advance directives themselves, which then can be used to encourage patients to follow suit.
Thomas Cornwell, M.D., has made almost 32,000 house calls through his practice, HomeCare Physicians, in Wheaton, Ill., to more than 4,000 home-limited patients, many of whom are at the end of their lives.
He told AAFP News that according to a 2013 study published in JAMA: the Journal of American Medical Association(jama.jamanetwork.com), a majority of Americans said they would prefer to die at home, but in 2009 only 33.5 percent actually did.
This is in contrast to HomeCare Physicians, which since 2003 has had 1,900 patients (or 74 percent) pass away at home. So Cornwell has firsthand experience fulfilling patients' wishes with end-of-life care in their homes.
Cornwell recommends starting a visit with an end-of-life patient with a "goals of care" assessment and by asking, "How aggressive do you want your care? Do you want to go to the intensive care unit and do everything possible (to save your life)? What are your goals of care?"
He said he tells patients, including a 91-year-old woman this week, "Between now and when you turn 100, there is a possibility that your heart might stop." And oftentimes, they will say things like she did: "I hope you don't plan on keeping me alive for nine years."
Cornwell also recommends using the Physician Orders for Life-sustaining Treatment (POLST) form(www.polst.org) with end-of-life care patients, which can vary by state. The group offers contact information(www.polst.org) for programs in most states that can provide locally appropriate resources.
This form includes information on do not resuscitate options, tube feeding and how aggressive patients want their care to be.
"As with most of my patients, when I left (the 91-year-old patient) this morning, she had completed the form and chosen to receive IV fluids but did not want to be hooked to machines in an ICU and she said it would be OK to have a trial of tube feeding through her nose," Cornwell said. "The only way you can achieve their goal is asking them, 'What are your goals for end-of-life care?'"
In addition, Cornwell recommends giving end-of-life patients the Five Wishes(agingwithdignity.org) form to fill out, which is provided by Aging with Dignity.
"It's a very easy, user-friendly form for patients to have as a power of attorney for health care that asks questions and takes you through different scenarios to let your loved ones know what your wishes are," he said.
After patients finalize their goals for care, Cornwell recommends providing end-of-life patients with what he calls "comfort meds" such as morphine, lorazepam and atropine so they have them when a physician is unavailable. He called this "suffering insurance."
"So I tell caregivers, 'I want you to have this medicine for your loved one because at 2 o'clock in the morning, if they can't breathe or they're in horrible pain, I want to have medicine here," he said. "I hope we end up throwing it all away because I hope they don’t have any suffering. But if they have suffering, I want to be prepared for whatever that might be."
Finally, Cornwell said he encourages end-of-life patients and their families to plan ahead for funerals or what he calls "honoring ceremonies."
"It's never too early to start to prepare for honoring our loved ones," he said. "If you were planning your parents' 50th wedding anniversary, you wouldn’t start planning for it four days ahead of time."
Cornwell said without planning, the situation ends up being a crisis.
"This is another way to try to make the end of life easier," he said. "It's going to be sorrowful, but it doesn’t need to be a crisis if we prepare for it like we prepare for everything else."
Academy Resources on End-of-life Care
In addition to the resources he mentioned above, Cornwell recommends family physicians review AAFP resources to inform their work with end-of-life patients.
The Academy's policies on end-of-life care cover core principles, life-sustaining treatment, medical orders for end-of-life care and postmortem decisions.
The AAFP also has advocated for government programs supporting end-of-life care.
More From AAFP
American Family Physician: AFP By Topic: End-of-Life Care