In September, the Palliative Care Access Act became law in New York, mandating patients be fully informed of and provided with available palliative care options and services when facing a serious illness or condition.
The law arrived on the heels of the Palliative Care Information Act, which became effective in February. PCAA expands on the PCIA because it applies to all hospitals, nursing homes, home care agencies and enhanced and special-needs, assisted-living residences. It requires all healthcare practitioners in those facilities to establish policies and procedures that provide patients, or those lawfully authorized to make decisions for a patient, access to information and counseling concerning palliative care and pain management consultations and services.David C. Leven, JD
“These two acts are important pieces of New York legislation, and I am surprised at the number of healthcare professionals who don’t know that they exist,” said David C. Leven, JD, executive director of Compassion & Choices of New York, a nonprofit organization that works through education and legislation to improve and expand end-of-life choices.
According to the acts, when a healthcare practitioner informs a patient he or she is in the terminal stages of a disease, the provider is mandated to explain care options to each patient, such as hospice, palliative care and pain management. If the patient says he or she does not want to discuss the options, then the practitioner documents that conversation and is required to explore the topic at another time. California passed a law similar to the PCIA, but it requires patients to request the information from their healthcare practitioners, which puts the burden on the patients, Leven said.
The PCIA and PCAA in New York recognize the importance of palliative care. The American College of Surgeons Commission on Cancer now requires cancer programs it certifies to have palliative care as part of the institutional cancer committee, and The Joint Commission is offering advanced certification in palliative care, said Anne Johnston, RN, MSN, administrative coordinator of the palliative care team at Sound Shore Medical Center in New Rochelle, N.Y. “We are using the acts as a way to raise more awareness among practitioners, both physicians and nurses, in our community,” Johnston said.
Not all healthcare providers are equipped to provide this information, but the law stipulates a provider can delegate someone who is trained, such as a nurse practitioner, social worker or palliative care specialist, to speak with their patients about specific options.
“Conversations about end of life have not been taught historically, many are not experienced in it and it’s not a comfortable topic, so discussions often have not occurred or have not been done well, which leaves patients feeling more confused and anxious,” Leven said.
For example, when a patient is told by a physician, “I can’t be your physician if you want to stop the chemotherapy,” the decision-making process rests on the patient, and the costs and downsides of continuing treatment or options in changing course are not discussed.
According to Leven, penalties can be imposed upon healthcare providers who do not provide this information.Judith Schwarz, RN
“The problem is that patients often don’t ‘hear’ upsetting news, and so the conversation about advance planning, prognosis or the end-of-life options may need to be repeated again and again,” said Judith Schwarz, RN, PhD, clinical coordinator for Compassion & Choices of New York.
Also, physicians and other healthcare providers wait for patients to bring up the topic of end-of-life choices, and patients wait for providers to tell them their treatment options. “It becomes a vicious cycle because many patients can’t talk with or ask their healthcare providers about topics such as palliative care and end-of-life care, and providers don’t bring it up,” Schwarz said.
As clinical coordinator, Schwarz educates patients who seek information about choices for better end-of-life care. She sees patients who have cancer, end-stage COPD, heart disease and neurological conditions, such as Parkinson’s disease and ALS, at no charge to the client or family.
Often patients come to Compassion & Choices because they have been through unsuccessful clinical trials or have suffered more from the treatment than the disease itself, Schwarz said. “The patients and families who seek us out are a self-selected group who usually want to take charge of their lives, who want to know what their options are and don’t want a pain-filled and prolonged death,” she said. Patients and their families talk about issues with Schwarz such as whether they want to continue life-prolonging treatment or seek aggressive comfort care and how to make informed treatment choices.
When meeting with patients, Schwarz finds out what they understand about their current disease process and what they have been told lies ahead for them in terms of treatment and quality of life. “I am often surprised at how ill-informed people are,” she said. Patients express concerns about disappointing or upsetting their physicians when they inquire about hospice care, rather than focusing on what they have a right to know and decide about their end-of-life care, Schwarz said.
Schwarz teaches patients how to advocate for themselves, identify goals and make informed choices. “It’s a matter of helping people feel less victimized and acquire the tools needed to communicate with physicians, nurses and family members,” Schwarz said. She also instructs families on the logistics of getting a loved one out of the hospital and back home, if that is their wish, assists in necessary steps for the hospice connection and talks with patients who want to discuss the choice of remaining NPO at the end of life.
The Compassion & Choices Foundation has clear guidelines about pain management, advanced directives and eligibility for hospice that Schwarz uses in her consultative services.
“With the PCIA and the PCAA, nurses can play a pivotal role in ensuring provider compliance and educating patients about their options,” Leven said.
If a patient knows he or she is terminally ill and a nurse knows the practitioner has not talked with the patient about his or her options, then the nurse can remind the provider that a discussion needs to take place between the provider and the patient. The nurse can be part of that discussion and offer information about palliative care services and end-of-life care, Leven said.
“The PCIA and PCAA empower patients to make informed decisions,” said Debra Fox, RN, FNP-BC, CHPN, hospice and palliative care family nurse practitioner at MJHS Hospice and Palliative Care in New York City. “In my practice, I find a great deal of work needs to be done with primary practitioners and specialists. These difficult conversations need to be initiated earlier on so patients and families can make educated decisions based on information about their prognosis and treatment options. End-of-life goals of care are important to discuss before it is too late.”
Ultimately, Leven and Schwarz want patients and families to choose end-of-life options that reflect their values and wishes. They want to increase patient enrollment in hospice and end-of-life care. Right now, the average length of stay in hospice care for dying patients is three weeks, Schwarz said.
Leven and Schwarz hope the acts result in improved patient care and training for healthcare professionals so they are more knowledgeable and comfortable when talking with patients about end-of-life care. “Because PCIA and PCAA are critically important patients’ rights laws, other states need to consider adopting them,” Leven said. “They serve as models for our nation.”