A Peaceful Farewell- An Essential Life Topic to Initiate Early

With over 30 years of hospice care advocacy in Taiwan, most people are now embracing the concept of a dignified end of life, and are increasingly clear in their views and accepting in their attitudes. However, the path to a peaceful farewell still seems somewhat unclear to some. Only through fully enhancing the psychological, legal, caregiving, ethical, and other considerations of hospice care is it possible to find fulfillment for the last mile of the life journey.

When asked how they would prefer to approach the end of their lives, most people hope to bid the world farewell in a serene and fulfilling manner. A good ending is the pinnacle of end-of-life care, serving as the ideal objective of hospice care and embodying the pursuit of peaceful and dignified transitions.

Hospice care has been promoted in Taiwan for over three decades, with Professor. C. S. Chantal Chao being recognized as the pioneering mother of hospice care. According to Professor Chao, hospice care emphasizes a holistic approach encompassing the body, mind, spirit and society. It does not hasten nor prolong inevitable death. Its sole purpose is to assist patients and their families and friends to navigate the last mile of life’s journey safely and peacefully.

Nowadays, the Taiwan public has formed a clearer attitude and understanding towards a dignified end. Hospice teams no longer have to spend extra time and effort communicating with families of patients when it comes to futile life-prolonging efforts. The discussion has been elevated to one regarding what can be done to increase the comfort of the patient after withdrawing futile medical interventions.

The Hospice Palliative Care Act and the Patient Right to Autonomy Act are two critical pieces of legislation regarding the final stages of life. The former focuses on palliative care for terminally ill patients, while the latter confers the right to refuse meaningless and futile life-prolonging treatments. These two pieces of legislation not only improve the quality of life for terminally ill patients by preventing ineffective medical interventions, but more importantly, they represent how society as a whole has taken on a different perspective. The strive for autonomy has now extended to medicine and the contemplation of what constitutes life.

In 2022, the Ministry of Health and Welfare expanded the scope of health insurance coverage for palliative care, so that elderly individuals in the terminal stage of frailty are now also eligible. This move holds significant positive implications for promoting a dignified and peaceful end to life, reflecting a society that is progressively more compassionate and considerate.

However, a dignified death isn’t always a simple or romantic affair, and it definitely cannot be achieved with a vague request such as: Do not resuscitate me. Sometimes, it is more difficult to stand by and do nothing than do everything in one’s power to save someone’s life. Every dignified death is the culmination of many difficult considerations and choices.

Ethical Aspect –

Appropriate Medical Intervention Prevents Regret

The most common misconception from the public about death with dignity is the distinct barrier between medical treatment and hospice palliative care. It’s often thought that the issue of dignified death is confronted only when the illness has progressed passed the point of no return. However, according to the World Health Organization (WHO), patients with life-threatening conditions or illnesses may begin hospice care at any time. This allows for the gradual understanding of the patient’s own outlook on life, so the most appropriate medical interventions can be adequately discussed.

Another common misconception is equating Do Not Resuscitate (DNR), that is, the refusal of medical treatments, with a dignified death. Dr. Sheau-Feng Hwang pointed out that in countries where medical costs are high, patients are often forced to stop treatment due to financial constraints, despite wanting to continue. In such cases, although patients do not suffer from excess and futile medical interventions, the question is then whether they consider this a dignified end to their lives. Taiwan’s National Healthcare System has greatly reduced the financial burden of medical services, so that what is needed is for patients and family members to work together and figure out what their bottom line is.

Dr. Hwang once met an old nurse who was battling cancer. In her work, the nurse had seen for herself many patients who suffered the side effects of chemotherapy, and therefore, she refused treatment thinking it would only prolong suffering. Despite being a proponent of dignified death, Dr. Hwang took a different approach and encouraged the nurse to give chemotherapy a try. He explained to the nurse that chemotherapy can be stopped at any time, and that if the therapy is effective to reduce the size of the tumor, she would gain some comfort and valuable time. One week later, the nurse conquered her fears and was able to control the pain; eventually, she became well enough to leave the hospital to fulfill her life’s dreams. Before she left though, she made a special visit to express her gratitude to Dr. Hwang.

“Doctors have an obligation to inform patients on when the treatment can be stopped, and when other choices are available,” Dr. Hwang emphasizes. There exists a significant chasm between the decision of whether to continue or to cease medical treatments, and that’s where the conversation often begins. A genuine dignified end of life should be one where patients are informed of and fully understand all of their available options, so that they make the most appropriate decision. While there may be no easy or perfect decision regarding end of life, it is crucial to strive for a situation where patients and their families are spared from lingering regrets.

Legal Aspect –

Death with Dignity May be Different for You and Me

Dr. Wan-Ting Hsieh is one of the few doctors who also hold a law degree. She explains that ideally, most medical personnel are willing to honor the patients’ desires, but in practice, this is very challenging to implement. This is primarily because in most cases, patients are no longer capable of communicating their wishes, and it is often left to family members to make decisions on their behalf.

Both the Hospice Palliative Care Act and the Patient Right to Autonomy Act have stipulations on the types of diseases and stages of illnesses for which hospice care is eligible. As a result, some patients may be unable to achieve their desired dignified end of life as they do not fit the criteria (e.g., not having eligible conditions or not being in an advanced state of illness). Dr. Hsieh explains that the Hospice Palliative Care Act is limited to terminal patients only so it’s easier to reach a consensus between patients and their families.

On the other hand, the Patient Right to Autonomy Act covers a broader scope of decisions (e.g., Should antibiotics be used for severe infections? Should a nasogastric tube be inserted?), and each decision has the potential to prolong the patient’s life considerably. To prevent disagreements between patients and their families, the law faces challenges if the patient has not already made a request.

“The law must take a clear stance, but clinical medicine tends to be more flexible,” says Dr. Hsieh. Some medical professionals find it difficult to see patients suffer and are willing to respect both patients’ and families’ choices, often by adopting a more relaxed interpretation or allow for greater flexibility in medical interventions. However, other medical professionals will adhere to the strictest interpretation of the law, driving families to seek a second opinion, where conflicting answers can be encountered. These scenarios create the most common disputes regarding a dignified end of life care in the medical field.

An elderly man with terminal lung cancer was admitted to the ICU because of a heart attack. They managed to save his life, but afterwards, he was unable to undergo his normal course of treatment. Wanting a dignified end of life, he requested to be transferred to the hospice ward, where he authorized his youngest son to act as his Health Care Agent (HCA) and make medical decisions on the father’s behalf. This decision was partly motivated by the elderly man’s desire to make amends for having given up his youngest son for adoption as an infant; the gesture greatly moved the son. As the old man’s condition deteriorated, Dr. Hsieh was afraid that he would not survive a second surgery. She conferred with the son, but that was when they reached an impasse. The son thought that a dignified death meant refusing treatment for only acute symptoms, but he wanted to give his father “another chance to fight it” if his father came down with another heart attack.

If the doctors followed through with the son’s wishes and proceeded with the surgery–even though it was in complete compliance with legal regulations–the father would likely have pass away in the midst of his suffering. Under extreme stress, Dr. Hsieh continued to communicate with the son and hinted that his father should consider the potential risks and true meaning of having a HCA. The medical team also continued to discuss the father’s condition every day, hoping to give him a dignified death that abides by not only the son’s wishes, but also legal and ethical conditions.

“This underscores the fact that each person has different expectations of a dignified death,” says Dr. Hsieh. In the end, the father passed away in his sleep before everyone had to make a difficult choice; however, Dr. Hsieh reminds us that the discussion of a dignified end of life should be held as early on as possible, and with as much detail as possible.

For example, many people want to spend the last moments of their lives in a familiar setting like their own home, yet there may be differences in when it is the right time to go. Further questions may include: Should I go home with a ventilator to take my last breath, or should I spend quality time with friends and family at home without one? If it’s the latter, Who will be responsible for end-of-life care? Or even, Which home should I return to, my hometown or where I currently live or the home of one of my adult children? These are all questions that require detailed discussions before reaching a consensus.

Caring Aspect –

Fulfilling Patient Wishes & Providing Care Until the Final Moments

Having dedicated 23 years of her life to hospice care, nurse Ms. Hsiao-Ching Liu reflects that when she initially entered the hospice ward, most patients were terminal and there was little she could do for them. She often joked that at times, she was more an undertaker than a nurse. However, as public awareness is on the rise, many more patients with severe illnesses are requesting hospice care earlier than before. Therefore, the road to a dignified end of life is also becoming more personalized and customized.

“Everybody has a different idea about what constitutes a dignified end of life. Some believe that it’s at home surrounded by their children and grandchildren, while others believe that it’s a body free of any medical insertions and devices, and passing away quietly without disturbing others,” says Ms. Liu. However, this might not always imply an irreversible choice. She shares an example of a patient whose acute symptoms stabilized in the hospice ward, leading to an increase in appetite and energy. This then prompted the patient to view life differently and eventually return for continued treatment.

Ms. Liu notes that no matter how one chooses to approach the end of life, hospice requires extensive care to alleviate the pain of different discomforts. An example is the removal of the nasogastric tube. Although terminal patients no longer require extensive nutrition, they still need some intervention to minimize their suffering in the difficult last stretch. In such cases, comfort feeding can be initiated. Through professional assessment, suitable food textures can be provided, or even a little olive oil to alleviate problems caused by stomach acid. Similarly, for terminal patients with constipation, appropriate care and treatment can be administered as well. The overly simple approach to stop eating and drinking is certainly not the only way to a dignified end.

Ms. Liu remembers that she once had a patient who was a very experienced and successful chef, who had cancer of the digestive system. The tumor made it difficult for a food lover like her to eat, so she would only take a few bites and refuse to eat more. Nevertheless, she still enjoyed trying different foods. Towards the end, she decided to remove the nasogastric tube and reclaim her chef’s robes to make her famous braised pork balls (also known as lion’s head in Mandarin) for everyone. Despite her fatigue and the cancer-induced swelling that nearly prevented her from wearing the chef’s robes, she still took Ms. Liu’s hand in hers at the end and said with deep emotion, “I’m so happy, so very, very happy.”

“Beyond the body, the spirit is another important consideration on the path of hospice care,” acknowledges Ms. Liu. When the patient experiences suffering towards the end, there are many techniques to alleviate a patient’s discomfort. Families can also find other methods to show love and care, such as talking, singing, listening to music, or even helping the patient fulfill a final wish. The last phase of life does not have to only be marked by tears, but can also be a time of serenity and gratitude.

Emotional Aspect –

A Dignified End of Life Involves Taking Care of Those Left Behind

“Having a death that can be anticipated and adequately prepared for isfor both the patient and their companionsa dignified death,” says Ms. Wei-Chun Lin, a clinical psychologist at the Cancer Center of Chimei Hospital at Liouying. Everyone desires a sense of control in life, and if patients and their families are fully prepared psychologically for the journey ahead, then it can prevent unnecessary medical interventions early on and bring about a sense of peace in the later stages.

Psychologists play an important role in family meetings within the hospice ward. They are responsible for assisting patients and their families in the organization and exploration of their thoughts and feelings, and helping them reconstruct a picture of what family life was for the patient. Additionally, psychologists must carefully determine whether family members are genuinely honoring the patients’ wishes when making medical decisions on their behalf.

“Some family members will tell me that the patient has a pessimistic demeanor and often talks about wanting to die,” Ms. Lin says. However, behind these hopeless, negative comments may be the patient’s attempts to seek attention from their family members, without really intending to give up on life yet. In some cases, the patient’s condition might not be as dire as it seems, but the family’s reaction might be unexpectedly hesitant to continue the battle. This could be due to the caretakers’ finding themselves at a financial or emotional breaking point on the long and arduous medical battle. The family members or caretakers will then require resources from mental health professionals or social welfare for assistance.

One Friday afternoon just before the end of her shift, an elderly man in a coma was wheeled to the hospice ward accompanied by two devastated daughters. His condition was very dire, so Ms. Lin hastily encouraged the daughters to express their thanks, apologies, affections, and goodbyes. In the presence of their father, they reminisced about the past together.

Ms. Lin had expected that when she returned to work on Monday, the elderly man would have already passed away. To her surprise, he had temporarily stabilized and improved, and was even able to enjoy some time outdoors in a wheelchair. She asked him, “Did you hear what your daughters had said?” He nodded slightly. Then Ms. Lin continued, “Did it feel good to hear what they said? Would you like to hear it again?” And the elderly man, whom the daughters had described as a stern and busy man, broke into a smile and chortled, “Yes! It felt great!”

“Once a person has passed away, there is no opportunity for closure,” Ms. Lin points out that a dignified end to life is not limited to the person who is passing away, but should include consideration for the friends and family, too. For patients with unresolved family issues, Ms. Lin encourages them to seek closure. She says this not only ensures that the patient has no regrets, but it is also about minimizing potential emotional turmoil for family members who are left behind.

Regardless of the length of one’s journey, the best possible outcome to hope for is one that is fully prepared for the final mile as the last goodbyes are expressed. Therefore, initiating discussions about a dignified end of life early on allows both the patients and their families to find peace in this transition, ensuring that the path towards the end is one of peace and contentment.