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Tanner: Residents Should Have a Difficult — But Necessary — Conversation


04.16.2019

It’s hard to talk about one’s own mortality. But those conversations about what one wants at the end of life can be vital in ensuring one’s own wishes are met — and can provide a comfort to loved ones who can be assured they’re making the right decisions.

However, fewer than half of the nation’s severely or terminally ill patients have included an advance directive in their medical record, and as many as 75% have not notified their medical care providers that they have an advance directive at all, according to a report from the U.S. Agency for Healthcare Research and Quality.

Advance Directive image“Advance care planning conversations should become as normal with healthcare providers as discussing why you should take a flu shot or receive an annual screening mammogram,” said Rodney Tucker, MD, director of the UAB Center for Palliative and Supportive Care at the University of Alabama at Birmingham and a nationally acclaimed advocate for advance care planning.

April 16 marks National Healthcare Decisions Day — a time to encourage families and loved ones to have those hard conversations about end-of-life care.

After all, it’s a reality that everyone is bound to face sooner or later.

Last month, Dr. Tucker visited Tanner Health System in Carrollton and led a discussion with clinicians, social workers and members of the medical staff at Tanner on the importance of advance care planning and how to address the issue with their patients.

The issue, according to Dr. Tucker, doesn’t stop with a signed piece of paper like a living will or advance directive — though those are important, too. It’s necessary to carefully designate someone to be a spokesperson and an advocate should a person no longer be able to advocate for him or herself, and to make clear to the spokesperson, loved ones and medical providers what one’s wishes would be.

“Advance care planning is about the process of communication between a patient and their loved ones — their decision-makers — and their healthcare providers,” said Dr. Tucker. “Traditionally, patients, families and healthcare providers think of advance care planning as a document: things like a living will or an advance directive. That’s the paperwork that you need to reflect a patient’s wishes about end-of-life care. Really, advance care planning is a process — it’s a conversation that begins between patients and their healthcare providers in a setting outside the hospital about what matters most to a patient, who speaks for the patient and what brings them to make decisions. Advance care planning is about the process of communication between a patient and their loved ones — their decision-makers — and their healthcare providers.”

According to Dr. Tucker, one reason people avoid discussing their wishes with loved ones or filling out an advance directive is because they don’t want to limit their options for care.

“One of the misperceptions about having an advance care plan or advance directive is that it will limit your care, which is further from the truth,” said Dr. Tucker. “It actually broadens the conversation to allow you to have the most options, per your wishes.”

The conversation can include voicing one’s wishes on the types of life-sustaining medical technologies that might be used, such as mechanical ventilation or feeding tubes, and whether healthcare providers should employ cardiopulmonary resuscitation, or CPR, to try to keep a person alive — even if it has very little chance of significantly prolonging one’s life.

Often, one’s proxy —the person designated to make decisions in one’s stead — is by default the next of kin, who isn’t always the individual one would want to make those decisions, according to Dr. Tucker. It may be better, for instance, to designate someone else in the family, like a nephew who’s a nurse or someone else who can fully understand the information and advice that’s available, to make the most informed decision about a person’s care in respect to his or her wishes.

Along with discussing one’s wishes with one’s family and physician, it’s also vital to have the paperwork in place to serve as a legal guide for the patient care team.

Most states — including Alabama and Georgia — have a standardized advance directive form that individuals can complete and have either notarized or witnessed. That form should be kept on file at home, with the individual’s designated spokesperson or proxy, with the individual’s attorney — and with his or her physician in his or her medical record.

If a change is ever made to the advance directive, it’s important to provide new copies to each person who has one and destroy the old forms.

Tanner makes downloads of approved advance directive forms available on its website at tanner.org/directive, along with information about one’s rights as a patient and how the form is used in administering care.

Having the form, said Dr. Tucker, and sharing those wishes with one’s patient care team is a vital step in helping to improve the quality of the care one receives.

“Having an advance care plan establishes what a patient values and how they want to live this part of their lives,” said Dr. Tucker. “That can only improve the care that patients receive when they’re diagnosed with a serious or terminal illness. It allows a patient care team to match the care based on evidence that would be beneficial to the patient and to the patient’s goals and values. That not only improves the quantity of the patient’s life — how long he or she lives — but it also significantly improves the quality of the life that he or she experiences.”

A native of Gadsden, Alabama, Dr. Tucker serves as a professor of medicine and holds the Christine S. Ritchie, MD, Endowed Chair in Palliative Care Leadership Steering Team at the University of Alabama at Birmingham. He joined UAB’s Center for Palliative and Supportive Care at UAB in 2002 and has served as the center’s director since 2013. He is board-certified in internal medicine and hospice and palliative medicine.

In the hospital setting, Tanner in the hospital setting, offers a complex disease management program that focuses on relieving the pain, symptoms and stress related to a disease. Participation in the program may begin when the patient is first diagnosed or at a later point in the disease progression, and care through the program takes place over an extended period.

“The cornerstone of great medicine isn’t only to cure, but to comfort," said Timothy Adams, RN, a registered nurse and coordinator for Tanner's complex disease management program. "We bring together a multidisciplinary team to help patients and their loved ones understand and approach the many medical, emotional and social challenges that come with a serious illness."

The program — also called supportive care or symptom management — provides clinical, evidenced-based, palliative support for serious or complex disease, such as cancer, neurological diseases (such as ALS, Parkinson’s disease and others), kidney or liver failure, lung disease or emphysema, congestive heart failure, chronic obstructive pulmonary disease (COPD), dementia and others. More information on the program can be found at TannerPalliativeCare.org.

Tanner health system also offers a robust in-home hospice program through Tanner Hospice Care. Tanner Hospice Care is for patients that are nearing an end-of-life situation, also offers a multi-disciplinary support team that focuses only on the patients comfort and relief of symptoms. More information on Tanner Hospice Care is online at TannerHospiceCare.org.

April 16 — National Healthcare Decisions Day — is intended to inspire, educate and empower the public and medical providers about the importance of advance care planning. The initiative is spearheaded by The Conversation Project and the Institute for Healthcare Improvement. More information and resources are available online at NHDD.org.



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