End of Life Conversations: Are You Prepared to Talk to Your Patients?
The new California law went into effect Jan. 1, 2016
in October, Gov. Jerry Brown signed into law the End of Life Option Act, making physician-assisted death legal for some terminally ill patients in California. The debate surrounding the new law has once again brought end-of-life discussions into the spotlight.
Since nurses are responsible for patient advocacy as well as direct patient care, it’s important for all nurses to understand hospice and palliative care, POLST and advance directives. Are you prepared for these conversations?
As individuals, we may hold passionate beliefs regarding some of the topics discussed here. The aim of this article is not to delve into pros and cons or rights and wrongs, but rather to provide an objective overview and offer some practical guidelines.
The Brittany Maynard Story
When 29-year-old Brittany Maynard received a grim prognosis for her brain cancer, she decided she wanted to have as much control as possible over the manner and time in which she would die. That’s why the California resident and her family moved to Oregon, where the “Death with Dignity” law has made physician-assisted suicide legal since 1997. Maynard ended her life with a legally prescribed lethal medication on Nov. 1, 2014, surrounded by her family.
Maynard’s journey infused new energy into the physician-assisted suicide conversation, prompting state legislatures across the country to take a fresh look at the issue. One of the states where that debate has reemerged is California, where Maynard’s status as a California resident and need to move to another state to pursue her wishes created a new urgency in the Legislature.
In September, the Legislature passed A.B. 15, the End of Life Option Act. The bill was signed by the governor on October 5. As expected, there was both fierce support for and opposition to the bill. Now that it has become law, you’ll soon be faced with patients who may have questions about it. To best serve them, and yourself, you should be prepared and understand where both your profession and your organization stand on the issue.
Here’s the official stance of the American Nurses Association:
The American Nurses Association (ANA) prohibits nurses’ participation in assisted suicide and euthanasia because these acts are in direct violation of Code of Ethics for Nurses with Interpretive Statements, … the ethical traditions and goals of the profession and its covenant with society. Nurses have an obligation to provide humane, comprehensive and compassionate care that respects the rights of patients but upholds the standards of the profession in the presence of chronic, debilitating illness at end of life.
In 2014, the Institute of Medicine released an important report: Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Basically, its findings were that many Americans aren’t spending their final days the way they’d prefer. Instead, many are receiving aggressive care they really don’t want in settings that don’t align with their wishes.
Findings like these are why the Centers for Medicare & Medicaid Services (CMS) recently introduced new regulations to reimburse physicians for advance care planning discussions with Medicare beneficiaries. The final regulations, announced on October 30, add two new billing codes for this purpose. The new codes will become available January 1.
A Yearning to Talk
If you think patients don’t want to have these conversations, think again. A 2012 study by the California HealthCare Foundation found that 80 percent of the state’s residents did want to have an end-of-life conversation with their physician, but fewer than one in 10 had done so.
When I spoke with Michael Fratkin, M.D., founder and CEO of ResolutionCare, a community-based palliative care program serving rural Californians, he wholeheartedly agreed. “In California, there is an explosion of interest in end-of-life issues and a committed effort by organizations dedicated to creating a better future,” he said.
“In our program,” Fratkin explained, “we’re working with three selected Northern California hospice organizations to pioneer community-based palliative care driven by a value-based payment model. In addition, we’re breaking ground by providing community-based palliative care using telemedicine.” In fact, ResolutionCare is breaking so much ground that this model was recently featured in a segment of PBS NewsHour.
How to Have an Effective End-of-Life Conversation
With such factors playing into the dynamics of end-of-life conversations, you’ll likely see more of them occur. As a nurse, you may be involved on a variety of levels. How can you ensure that you’re engaging effectively to support your patients’ needs?
I asked Kathleen Taylor, M.A., LMHC — a 20-year hospice veteran and healthcare communication consultant — for her perspective on these critical discussions. “Creating the time and space to explore what really matters to patients requires a specific set of artful skills that have atrophied in much of healthcare,” she says. “The good news is that these skills can be taught and learned and now there are incentives to acquire them.”
Taylor, who trains providers to have challenging conversations, says it’s important that professionals learn more than just the concepts and steps of conversation models and advance care planning processes. She emphasizes the need for training that cultivates specific skills in empathy and compassionate communication.
In a recent interview with The Dallas Morning News, Atul Gawande, M.D., MPH, author of Being Mortal: Medicine and What Matters in the End, also emphasized the need for clinicians to increase their comfort with end-of-life discussions. He cited three core principles to keep in mind:
1. Patients often have priorities that have more importance than living longer.
2. In order to find out what those priorities are, we have to ask.
3. When we don’t ask, patients often end up with care and treatment that aren’t aligned with their true priorities.
Important Steps for Your Practice
As you gird yourself for these essential conversations, it may be helpful to keep a few things in mind:
◗ Understand yourself. Know what beliefs and biases you hold that may influence your words — and then pack them away. Patients deserve an objective provider of support and information, not someone who will try to sway them in a particular direction.
◗ Build a relationship. As both Taylor and Gawande note, the ability to have effective end-of-life conversations is an art. Listen closely to what your patients say and create the time and space to do that.
◗ Ask — and then advocate as needed. You certainly don’t need to wait for the physician to bring up the subject — you can step up to the plate and help your patients speak for themselves. They often don’t know how to do that, so you’re an important part of making that happen.
◗ Educate yourself. Learn everything you can about advance directives and the variety of options available in your community for end-of-life care support. A key thing to understand is that palliative care and hospice care are different animals with different options available for the support of curative care.
◗ Practice what you preach. You and your family can benefit from such practices as well. Have these important conversations with your loved ones so another nurse doesn’t have to do it for you down the road.
With all of the energy being generated around end-of-life issues, your patients need your expertise, courage and support more than ever. By following a few key strategies, you’ll be better prepared to dig into these critical conversations with them — and help to ensure that your patients are empowered in getting what matters most for them in the end.
On a Personal Note
As a hospice veteran, certified hospice and palliative care nurse (CHPN), and primary caregiver for my mom in the final years of her life, end-of-life care is near and dear to my heart.
My mom took charge of her healthcare decisions long ago and hadn’t been hospitalized since 2011. She died peacefully on May 29, 2015 — in her own home, in her own bed, with me by her side. We were gifted with a wonderful community-based palliative care team and then later hospice in our community which helped to ensure that her comfort needs were met and that she maintained autonomy in her healthcare decisions.
Mom spent her final years the way she wanted to because we had many end-of-life conversations about what mattered most to her — and how we’d make it happen. Our journey together is a gift that I’ll be forever grateful for.
Sidebar: California’s End of Life Option Act (A.B. 15)
The end of life option act, which takes effect January 1, addresses a highly controversial subject: the legality of physician-assisted death in California. The new law amends California’s Health and Safety Code to protect clinicians, pharmacists and their employees from civil or criminal liability if a terminally ill patient uses doctor-prescribed lethal medication (described in the statute as an “aid-in-dying drug”) to end his or her own life. Individuals (including family members) present at the time of the patient’s death are also protected so long as they do not actually administer or assist in the administration of the drug.
To qualify for immunity, an array of conditions must be met, including the following:
◗ The patient must be an adult California resident.
◗ The patient must be certified as terminally ill with a prognosis of less than six months. (Simply being elderly or disabled is not sufficient.)
◗ The prognosis and the patient’s mental competency must be confirmed by both the attending physician and a qualified consulting physician.
◗ If there is any question about the patient’s mental competency, the patient must also be assessed by a mental health specialist.
◗ Patients must submit two oral requests and one written request for a lethal prescription. The oral requests must be at least 15 days apart.
◗ The written request must be signed in front of two adult witnesses, only one of whom may be related to the patient. The witnesses must confirm that the patient is mentally competent and not acting under duress.
◗ All requests must be submitted to the attending physician. Patients can change their minds at any time.
◗ The attending physician must submit required paperwork to the California Department of Public Health within 30 days of writing a lethal prescription and within 30 days of the patient’s death.
A patient who dies through the use of a drug prescribed under this statute will not legally be considered to have committed suicide. Starting January 1, it will be illegal in California for insurers to cancel a terminally ill patient’s coverage or hike rates if the patient seeks (or declines to seek) a lethal prescription under this statute.
The new law will only remain in effect through the end of 2025, at which time the Legislature will have to decide whether to extend or amend the existing rules.
The law emphasizes that provider participation is strictly voluntary. You’re not required to support or assist patients in seeking a lethal prescription or even provide information about the process. You can’t be fired or disciplined for refusing to participate for moral or ethical reasons. Your employer also has the right to refuse to participate. Under the new law, a hospital or other healthcare employer may set a policy not to support terminally ill patients in seeking to end their lives. If your institution sets such a policy, you can be disciplined for assisting or educating patients on this option during work hours or on your employer’s premises.
Sidebar: Dying in California
How does California compare to the rest of the nation on end-of-life issues? The Coalition for Compassionate Care of California (CCCC) and the California HealthCare Foundation (CHCF) recently released a new report entitled Dying in California: A Status Report on End-of-Life Care, a state-specific complement to last year’s Institute of Medicine’s Dying in America report.
In general, California scores relatively well, thanks in part to several important legislative initiatives of the past 15 years. For example, all health plans in California, including Medi-Cal, must cover hospice care as a basic care service. A new law, A.B. 637, will shortly allow nurse practitioners to sign POLST (physician orders for life-sustaining treatment) forms. Another new law recently authorized a pilot program to develop a secure electronic registry of POLST forms.
However, there is still room for improvement. The CHCF warns that the need for palliative care services still greatly exceeds the supply. Also, while California has developed a standard curriculum for POLST training — the only state yet to do so — training in palliative care is still limited mostly to specialists rather than being part of the standard skill set for all providers.
Another issue is that California still has regulatory barriers that limit hospice organizations’ ability to combine curative and palliative care. With the Centers for Medicare & Medicaid Services taking tentative steps to end that separation and give critically ill patients a broader range of options, it remains to be seen whether California will follow suit.
Sidebar: The Differences Between Hospice and Palliative Care
✭ Pain and symptom management for those at end of life
✭ Requires a life expectancy of six months or less
✭ Focuses on comfort care rather than curative care
✭ Palliative care is always included
✭ Care is provided by an interdisciplinary team.
✭ Pain and symptom management for anyone facing serious illness
✭ May be partnered with hospice organizations, but can be independent of them
✭ No limited life expectancy required and supports curative care as well as comfort care
✭ Care is typically provided by an interdisciplinary team
✭ Widely available in hospitals and increasingly available through community-based models.
Sidebar: Where States Stand on Physician-Assisted Suicide
Doctors are allowed to write lethal prescriptions for self-administration in:
❢ New Mexico (currently under appeal)
Medical aid-in-dying legislation being considered in:
❖ District of Columbia
❖ New Jersey
❖ New York
Source: “More States Consider ‘Death with Dignity’ Laws,” Pew Charitable Trust, March 9, 2015
Sidebar: Atul Gawande’s End-of-Life Conversation Starters
• What’s your understanding of where you are with your health at this time?
• What are your fears and worries for the future?
• What are your goals and priorities if your health worsens?
• What are you willing to go through — or not — for more possible time?
This article is from workingnurse.com.