At the end of life, can we truly have the right to choose our medical treatments and make the necessary preparations? Since the Patient Right to Autonomy Act was implemented six years ago, the number of people signing has steadily grown. But is this conversation happening widely enough? For many, it’s not refusal—but simply not knowing how to begin. Families and patients often hold different views, and talking about death remains unfamiliar. Through interviews with frontline advocates and stories from medical settings, this article uncovers the challenges of putting the Act into practice.
"I wanted to sign, but my daughter wouldn’t let me—she said it would bring bad luck."
At a community event promoting the Patient Right to Autonomy Act (often called the Autonomy Act), a grandmother in her seventies raised her hand and softly said this. The room fell silent. It revealed a core difficulty in promoting this law—not that people don’t understand it, but that some things are simply too hard to say.
Six years into the Autonomy Act, the number of signed directives continues to rise, seemingly signaling progress in institutional adoption. Yet, in many outreach and education sessions, hesitant eyes are still common, and long stretches of silence often linger as no one is willing to be the first to speak up.
It's Not Opposition—It's Not Knowing How to Begin
Twenty-five years ago, the Hospice Foundation of Taiwan helped launch the Hospice Palliative Care Act, ensuring that terminally ill patients could legally refuse aggressive resuscitation. "Since 2010," said Jaffa Chang, CEO of the Foundation, "we began promoting Advance Care Planning because we saw many non-terminal patients fall into irreversible unconsciousness." If people can express—while still conscious—what treatments they do or don't want, their wishes can still be respected even after they lose the ability to speak. This was the origin of the Patient Right to Autonomy Act.
"The Act extends the work of hospice care—it offers a solution for those who aren't terminal yet may lose consciousness," Chang explained. Hospice isn't passive waiting for death; it's helping people carry their values to their final moment. Through Advance Care Planning (ACP) and the signing of an Advance Directive (AD), the Act gives people a chance to discuss these choices earlier—while they still can.
The process of life winding down requires not only medical care but also spiritual grounding and the mending of relationships. Yi-Lin Yeh, Assistant Professor in the Department of Social Work at Tunghai University, explains that hospice and palliative care provide gentle support, while the Autonomy Act offers choices and direction. ACP is not about teaching the law—it's about helping people practice saying something deeply difficult.
"When I lead ACP sessions, I often see families talking about death together for the first time," said Yeh, who previously served at Taipei City Hospital and worked as a hospice social worker. "Many people never realized they had the right to choose, to refuse, or to leave clear instructions."
As a legislative advocate for the Act, Yu-Hsin Yang, Founder of the Action for Love Social Welfare Foundation, highlighted another major issue: "The biggest problem is that many people don't even know the Act exists." During her advocacy work, she often encounters people saying, "Oh, I've already signed it!" But in reality, some mistakenly think that an Advance Directive is the same as a Do-Not-Resuscitate (DNR) order, while others assume that it has legal standing to have vaguely told their family, "Don't make it too hard for me when the time comes." These misunderstandings are widespread.
Our Society Is Still Not Used to Talking About Death
Jaffa Chang pointed out that in promoting the Autonomy Act, the Hospice Foundation of Taiwan most often encounters not opposition, but misunderstandings—either overly simplified or one-sided. "The issue in our society is not that people refuse to talk about death, but that they have never practiced talking about it properly, nor developed the habit of discussion," she acknowledged. Many people skip the step of preliminary discussions (Pre-ACP) with their families and go straight to scheduling an ACP consultation. As a result, many concepts, values, and preferences are never thoroughly discussed. Though society has become more open to discussions of death and opportunities to encounter the topic are more common, most people still do not know how to begin. Many assume that simply signing an AD equals a good death, and once the form is signed, the conversation ends. Years later, even they may not remember what they signed. When the time comes, this lack of clarity can create tension between families and medical staff.
Yi-Lin Yeh also shared her observations from Taipei City Hospital, saying this silence is not accidental, but a form of collective suppression. "Everyone actually knows what the others are thinking, but no one wants to speak first." Some terminally ill patients are fully aware of their condition and do not want futile treatments. Yet they remain silent because they fear that if they bring up death, their family members will cry. On the other hand, family members feel that mentioning it first is like casting a curse—so they stay silent too. And so the most common scenario is mutual pretense: one side is afraid to speak, the other is afraid to ask.
Only when the patient is critically ill does the medical system, by default, proceed with full resuscitation. This is the scene Yeh finds most unbearable: the patient is dying, the doctor stands by the bed and asks the family, "We need to intubate now—do you want us to resuscitate?" At that moment, the family cannot think rationally; emotions take over, and their instinctive answer is, "Save them!" — allowing treatment to continue through tears and hesitation. In truth, the key to promoting the Patient Autonomy Act is not the medical procedures themselves, nor the paperwork—it's the willingness to have the conversation.
A Good Death Should Be Defined by Each Individual
"My father did talk about a good death—he said he didn't want to be saved," Yeh said. But when she hears family members say this, she always asks, "Do you know what he meant by a good death?" The answers are often quite different from what one might expect.
Today, the idea of a good death seems to have been reduced to a rigid public definition. Many elders only say, "I don't want any tubes," but never clarify—which tubes? A urinary catheter? A nasogastric tube? Or an endotracheal tube? Yeh suggests that people practice communicating more completely, saying things like, "If there is no chance of recovery, I don't want to be intubated," or "Which treatment will keep me more comfortable?" In clinical settings, there have even been cases where refusing a urinary catheter caused painful
urinary retention.
"Some people believe that refusing intubation is dignity. But for those who choose to be treated until the very end, that should also be respected—because it reflects their personal beliefs about life," said Jaffa Chang. That is precisely the spirit of the Patient Autonomy Act: to think clearly, to be willing to talk with family, and to respect each person's autonomous decision. A good death shouldn't have a standard version. It should reflect each person's life story, values, and faith. Ultimately, the real conversation is not about "how to die," but about "how I want to live—right up to the final moment."
Yu-Hsin Yang later stopped using technical or legal terms to introduce the Act. Instead, she would say: "This is a letter you write to your future family, telling them how you hope they will accompany you on your final journey." She explained that if the language is too cold or unfamiliar, people instinctively reject it. Signing the form is not the goal—quality consultation is. The Patient Autonomy Act is not only about the moment of removing machines or stopping CPR. It is a conversation about life and relationships: How do you want your farewell to be held? Where do you want your children to remember you? What do you hope to leave behind in this world? These expressed choices are not only medical decisions but reflections of values.
Advocacy Cannot Rely Solely on Passion
But to make these conversations happen, slogans and institutional mandates aren't enough—and they cannot be pushed along the way by the healthcare system.
"In fact, once a patient has gone through the ACP process, even if they can no longer express their will, as long as the physician follows the Advance Directive, they are fully protected under the law. It protects doctors and forms the foundation of trust between patient and physician," said Yang Yu-Hsin. Yet under current regulations, only medical institutions are authorized to conduct ACP. "If more community organizations could participate, we could expand service capacity, help people complete ACP earlier, and reduce the burden on hospitals."
Chang agreed, stressing that ACP requires time, space, and emotional support. Yet the current system places a heavy clinical workload on frontline healthcare, making it hard for even major hospitals to consistently allocate staff—let alone rural facilities.
"We've turned ACP into a bureaucratic process, not into a part of medical culture. If frontline medical staff are not trained, and don't grasp its core values, they won't truly want to do it," said Yeh Yi-Lin. Reflecting on Taipei City Hospital's experience, she recalled how change began with the superintendent's determination and a focus on life literacy. Looking ahead, she believes community caregivers—home aides, long-term care workers—should become the first point of contact, helping elders think through these issues before being referred to hospitals for formal consultation and signing.
This difficulty in implementation is also a question of resource allocation. One ACP consultation costs about NT$3,500. It may sound reasonable, but expectations differ between healthcare providers and the public. Chang admitted that the current system is sustained by passionate good people, which is not sustainable. A sound structure is needed—one that allows willing practitioners to continue, and provides incentives and accountability so medical institutions see ACP as a core responsibility, not an optional extra.
The Vulnerable Must Not Be Left Behind
To raise the quality of ACP, gaps left by the system must be filled by civil organizations. According to Yang, the first step is ensuring that vulnerable groups—those burdened by illness, lacking access to information, or living with disabilities that hinder communication—do not lose their right to choose. She remembers one advocate most clearly: Xiuxiu.
Xiuxiu had spinocerebellar atrophy. She was fully conscious but unable to speak. After watching many patients spend years bedridden without dignity or quality of life, she resolved to choose differently. At Yang's invitation, Xiuxiu joined advocacy efforts for the Autonomy Act, struggling but determined to express her will with her hands. Her mother fully supported her desire to sign an Advance Directive and to donate her brain for medical research. Looking back, her mother said that although her heart was breaking, honoring her daughter's wish brought peace—even in the pain of a parent sending off their child.
"The Autonomy Act is not just about terminally ill patients. We've long promoted the Vulnerable Service Program to support families caring for disabled or severely ill members," Yang said. Not every patient receives a chance to understand the law like Xiuxiu did. Often, caregivers collapse first under the pressure.
This is why the Vulnerable Green Pathway was created—a network of 28 hospitals nationwide helping people in rural areas, rare disease communities, people with disabilities, or high-risk families complete ACP. In the beginning, the obstacles were immense—no funds, no staff. So organizations like the Patient Autonomy Research Center and Action for Love Foundation raised money and trained personnel themselves to make this pathway possible.
"This isn't how a system should work," Yang said, "but if even we don't do it, who will protect them?" She is now promoting One plus One, One plus Two, allowing patients to bring one or two family members into consultations. The goal is to build a shared understanding of medical decisions so that loved ones don't face the last journey burdened by ignorance, fear, or lifelong regret.
An Unfinished Journey: Staying Until the Last Word Is Spoken
For frontline advocates, the hardest part of the past six years of promoting the Autonomy Act has not been explaining the law itself, but encouraging people to speak. No matter how many signatures are collected, nothing compares to that one moment—when someone finally sits down and says to their loved ones:“When the day comes, this is how I want to go.”
Conversations like this do not happen on their own. They require someone to be present—to guide, to explain, to wait patiently as a family slowly finds the words. For now, advocates often fill the gaps with passion, investing time to build trust while hoping for a more complete system in the future.
We have not yet reached the ideal destination, but the journey cannot stop. The true meaning of promoting the Autonomy Act is not only to help people learn to choose, but it is to assure them: “When you are ready to speak, someone will be there to listen, and your words will matter more than anything else.”