Most adults lack an advance care plan to address end-of-life issues as part of their estate plan. A failure to plan and communicate your wishes in writing leaves death-bed decisions beyond your control and in the hands of others while causing additional burdens on loved ones.
Surveys say that 90% of adults, when asked about the sensitive topic of end-of-life care, would prefer dying at home when the time comes.
Realizing that nobody lives forever, we'd like to imagine of a peaceful, painless death surrounded by loved ones in our own beds.
Yet, statistics show two-thirds of Medicare beneficiaries age 65 and older pass away in a nursing facility, hospital or other institution, far from the comfort of home and family as they may have envisioned.
One preventable cause, experts say, is that adults too often fail to discuss their preferences with health care providers and family members and don't create an advance care plan.
As part of an overall estate plan, an advance care plan includes several documents that formalize your instructions. A living will, a health care power of attorney, HIPPA waivers to share medical information, do-not-resuscitate orders and instructions for your final arrangements leave little up for debate when the time comes.
Despite our common hope for a peaceful passing, only four in 10 people age 65 and older have engaged in advance care planning with their doctor - a service now covered by Medicare - according to the Kaiser Family Foundation. While 90% of adults surveyed agree that doctors and patients and families should talk about end-of-life care, only 17% of adults said they have talked about it with their doctor.
The American Bar Association reports that two-thirds of adults in the United States lack a living will with written instructions that can specify what measures you find suitable to keep you alive if you were critically injured, became terminally ill or fell into a permanent vegetative state.
The lack of preparedness is compounded because many people wrongly assume their last will and testament deals with those issues. Others leave the burden to loved ones to decide, or disagree, over agonizing end-of-life issues - or clinicians have the final say without knowing your wishes. Procrastination in dealing with a topic people would rather avoid - contemplating one's final days of life - is another culprit leading to a lack of planning.
Having a plan can make the difference between a dignified death and one rife with complications and excessive measures, advises Dr. Rod Hochman, CEO of national health care system St. Joseph Health.
He has spent decades caring for patients and dealing with life and death issues. But it was his experience with his mom and dad that taught him the most valuable lessons about end-of-life treatment and having a say in how our final transition takes place.
“Many deaths in this country continue to take place in hospitals or nursing homes, often due to complications of overtreatment. My dad died that way at a hospital on the East Coast years ago after suffering a massive stroke,” says Hochman in a blog on his organization's website.
“When I reflect on the experience, I remember what a chaotic and agonizing time it was for him and our family. I often wonder how things might have been different if we had a more realistic conversation with the clinicians about his prognosis. Would his passing have been more peaceful if he had a care plan that focused on quality of life and comfort as opposed to continued aggressive treatments?”
Hochman said the death of his mother was the opposite experience.
“After battling metastatic colon cancer, she lived her final days at home. She passed away peacefully in bed, surrounded by loved ones, exactly the way she wanted. It was a sacred time for our family that I will treasure forever.”
Hochman says that experience with his parents has helped shaped his organization's approach to end-of-life care. He has found that “the care for incurably ill people remains one of the most broken parts of the U.S. health system.”
The solution, he says, “starts with clinicians talking to patients early on about what kind of care they would want in the event they become incapacitated. It's about listening intently to our patients to understand what matters most to them so we can help them live the best life possible in whatever time they have ahead.”
In that effort, St. Joseph offers online support tools for its patients and their families to partner with clinicians in discussing and making detailed treatment and care decisions. The site, AP Decisions, enables patients, doctors and families to communicate and work together to create living wills and other documents to formalize their instructions.
The organization uses video presentations to support individualized care. They enable patients to understand the most common serious illnesses, including heart failure, cancer, dementia, renal disease, lung disease and liver disease and some of the treatment decisions they may confront.
The Decisions site lays out the many topics that may need consideration: hospice, CPR, goals of care, caregivers, the intensive care unit, skilled nursing facilities, palliative care, the neo-natal intensive care unit, surgery, feeding tubes, and the list goes on.
Since Jan. 1, 2016, Medicare has included advanced care planning counseling as a covered benefit. ACP takes place at the discretion of the beneficiary, often during a Medicare patient's annual wellness or routine office visit.
Although the Medicare benefit is relatively new, efforts to encourage extensive end-of-life planning have been active for decades.
One example is the Aging with Dignity organization, which in 1998 developed the Five Wishes advance directive that is now accepted in 42 states as a legal document. It's described as “the first living will that talks about your personal, emotional and spiritual needs as well as your medical wishes.”
The Five Wishes form is a detailed guide that includes checklists with numerous common preferences to choose from as well as space to document unique requests. The first two wishes deal with naming a health care proxy and end-of-life treatment preferences. The last three address personal, spiritual and emotional wishes. The five elements of the Five Wishes advance directive are:
- The person I want to make care decisions for me when I can't. In this section, you can name your health care power of attorney and two alternates. It also includes suggestions on picking the right person to make medical treatment decisions on your behalf.
- The kind of medical treatment I want or don't want. The second wish deals with instructions to your caregiver regarding options for life-support measures. It addresses your wishes regarding artificial means to keep you alive, severe brain damage and other terminal conditions.
- How comfortable I want to be. This section spells out a variety of requests that range from pain management, personal hygiene and even physical pampering as specific as massages and use of a cool moist cloth in case of fever.
- How I want people to treat me. Do you want people with you when possible? How about having members of your faith community to pray for you and visit with you? Do you want to pass away at home if possible? These some of the personal choices you can include.
- What I want my loved ones to know. The fifth section is another series of wishes of a personal nature. You may wish that family members make peace with one another or that you are remembered as you were before your illness. You also can include specific information about your funeral arrangements and related matters.
The form is to be signed by the individual and two witnesses, and it includes a section for notarization. Once completed and signed, copies of the Five Wishes form can be distributed to loved ones and your doctors. You can even list recipients of the copies on the original form.
The elimination of pain and suffering, for both you and your loved ones, is a top priority for health care providers as the inevitable approaches. The American Medical Association recognizes the emotional and ethical challenges that confront patients' families and health professionals. The AMA encourages doctors to be proactive with patients in developing advance care plans - regardless of age or health status - and periodically review them.
“Physicians are responsible for assisting patients in creating plans for end-of-life care, encouraging discussion of this subject with sensitivity to patients' situations and respecting patients' preferences for EOL care,” the AMA advises.
Now, for Medicare patients, planning to have the final say on your final day is as easy as a visit to the doctor's office.