(The author is senior reporter for Hospice News and Palliative Care News, and is passionate about writing with an impactful purpose. Editor’s note: This excerpt, used with permission, is from Hospice News. The author did not address planning for an EOL exit.)
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Many families are ill-equipped to handle physical, emotional, psychosocial, and practical needs of a loved one nearing the end of life. Forging stronger collaborations with advance-care planning service providers can help hospices ensure better goal-concordant care.
Decisions at the end of life reach beyond an individual’s medical condition and involve in-depth consideration of how each person defines quality, according to Executive Sharon Hamill, executive director at the California State University Shiley Institute for Palliative Care.
Advance directives provide a basic foundation of guidance for a family and healthcare, but often gaps appear when unforeseen circumstances arise.
“The devil is in the details. There are big decisions that need to be made, but it’s millions of little decisions where families have the most difficulty and the misunderstanding if a person lacks capacity,” said Hamill. “What’s thrown at you may not have been anticipated [and] there is a real disconnect for families and patients … Those little decisions where family members seek certainty in an advance directive are not an exact science … It’s a basic road map or guidepost.”
Being transparent about the trajectory of terminal illness is important for advance-care planning, Hamill said. The physical progression can help families prepare for a time when their loved one may be unable to voice their pain and symptoms.
Advance planning can help provide “wraparound” support well before a patient is nearing the end of life, said Dr. Karl Steinberg, medical director at Hospice by the Sea.
Talking about patient preferences and goals can help reduce feelings of conflict, doubt, and guilt during difficult decision-making times, Steinberg said. Realistic expectations for patients and families about resources available (through insurance and government reimbursement), and additional care needed, can be decided. Armed with this information, patients may know what would be a safe, appropriate-care setting alongside the trajectory of their illness, Steinberg stated.
Healthcare providers know the importance of advance-care planning (ACP), but time constraints and societal views around death are two large barriers preventing wider access and use of these services.
“Among clinicians, time is most invoked for not prioritizing ACP,” Steinberg said. “They shy away from the topic because they don’t want to be seen as taking away hope or being too negative. On the patient side, mistrust of the healthcare system … can derail these discussions.”
Even with advance directives, the end of life can be a time of crisis for families, said Judith Wood Mintz, director of social work at Unity Hospice and Palliative Care.
EOL decision-making can be complicated by factors such as rapid changes in a patient’s medical condition alongside complex feelings of anxiety, concern, grief, and sadness, Wood Mintz said.
Planning for potential circumstances is key to ensuring positive experiences and meeting the immediate and evolving needs of patients and families, she added. Greater patient and referral education efforts must move the needle toward improved outcomes.
To make real progress, we must expand planning beyond just advance directives to comprehensive EOL planning that anyone can do at any stage of life. But it requires collaboration across industries like hospice, life insurance, estate law and senior living, working together with planning tools.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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While advance care planning is vital at EOL, a POLST (Physician’s Order for Life-sustaining Treatment) is the best document to remove the guesswork from the patient’s EOL choices. This simple 2-page document, created between the patient (or POA) and the physician, drills down to what matters at EOL. Comfort care only or do everything; DNR or CPR; feeding tube or no thanks; dialysis or not; are among the choices. I am an EOL counselor, and I always recommend that my clients have a POLST, especially as they near the end of life. What is surprising is that, although POLSTS or some versions are available in all states, many doctors and healthcare providers have no idea what this form is or what value it has in EOL decision-making. Doctors don’t want to discuss death even when they know their patient is dying. That’s a sad truth, and it’s the patient and family who suffer. How do you bridge that divide?
Another recommendation is for the patient to record a short video about their EOL wishes. I recently had a client who recorded his video one day before he became incapacitated. His family had his wishes stated in his own words as he stared straight into the camera, and it made all the difference to them. His wife and children no longer felt guilty about stopping the futile medical treatments, and they brought him home to hospice because it was his wish to go home to die. It is another powerful tool that is too often underutilized.
This post and comment moved me to reach out once again to a state official to see if the POLST (or MOLST in my state) is still only able to be executed when a “6-month or less to live” diagnosis has been made. “MOLST orders are for patients who are at the end stage of a serious life limiting illness or in a condition of advanced chronic progressive frailty as determined by a physician or advance practice registered nurse. The MOLST form documents patients’ decisions in a clear manner that can be quickly understood by all providers, including first responders and emergency medical services (EMS) personnel.” Same parameter is in place for a state issued DNR bracelet that first responders will honor. I will be curious to see if anything has changed since I first inquired. As I shared with the DPH official, one’s death might come “when unforeseen circumstances arise”. May we look to this new year to see real progress in comprehensive EOL planning and support of same by medical practitioners, service providers and loved ones. Thanks to Holly for the prompt to check my paperwork and my messaging. And Althea for reminding me to check back in with my state re MOLST. It takes a village.
What a crock!! Reads like an ignorant AI article; all blather no substance. What we need and want if we are even half aware of our state of health is specifics. Who/what are these ACPS providers, where are they? how do I find them and evaluate their services. Do they even exist outside major cities? Maybe you need some 70 plus journalists to write the kind of article that will actually help the patient and their family/care givers make informed and reliable choices. Sorry Holly, nothing personal, you just aren’t old enough nor experinced with end of life to have a valid point of view.