When I first stepped into the quiet corridors of hospital chaplaincy, I had no idea that witnessing the final moments of life would become one of my greatest spiritual teachers. In 2010, I began my first unit of unpaid on-the-job chaplain training, known as clinical pastoral education (CPE). I was completely new to the world of chaplaincy and knew little about supporting the psycho-spiritual well-being of patients in a hospital setting. At the end of my first week, I unexpectedly had to work my first 24-hour shift.

I was so inexperienced that I did not know how to find the emergency room, but that day changed me forever as I spent 18 hours with three dying patients. The juxtaposition of peace and tragedy left a deep impression and led me to become an advocate for advance care planning. I share these three brief stories with you in the hope that they illustrate why advance care planning is essential, even for younger people. After sharing these stories, I offer my insights from my perspective as both a Buddhist practitioner and chaplain. I hope these reflections can benefit you in your journey.

A Buddhist chaplain’s stories

My first patient was a woman who had almost died four years before her actual death. Her family had planned for her upcoming death before the time came to arrive at the hospital for end-of-life care. The family were grateful for the extra years, and calmly arrived throughout the day to say their goodbyes. They shared that the entire family had discussed this moment—taking time each year to check in and ensure that they understood the plan. They were all on the same page, and simply wanted me to visit periodically to chant Buddhist prayers, read Psalms from the Bible, and maintain periods of supportive silence. Hers was an inspirational death.

My second patient was a man at the natural end of his lifespan. His healthcare agent, his wife, had lower cognitive capacity and was unable to understand that his death was imminent. She did not communicate his end-of-life status to the family.  As a result, he had been needlessly resuscitated five or six times in the preceding week. CPR is not like what we see on TV. Ribs are broken and the body can be subjected to a lot of trauma. This patient was in renal failure and would pass shortly no matter how many times we tried to extend his life. On some occasions, we try to help sustain life to give families time to gather to say goodbye to their loved one. But in this case, the family did not know he was dying. In the late afternoon, the agent went home to rest and the patient was alone.

I visited this patient throughout the day because the staff did not want him to be alone. At 3:30 a.m., I was paged for support. The doctor was on the phone for half an hour with the patient’s wife, trying to help her understand that her husband might not make it through the night. His wife kept repeating, “It’s OK. I will be in at 7 a.m. and then we can talk about treatments to make him better.”

The staff were distressed, and felt relieved only when they knew that I was in the room as a companion to the dying patient. In the morning, as relatives arrived, none of them were aware he was so near death. I had the difficult task of explaining to shocked family members that this was their last opportunity to visit, all along knowing that they could have had the entire week to say their goodbyes. 

I remember his 14-year-old granddaughter, who was completely unfamiliar with the environment. Because no one had talked with her, she was afraid he had died each time the machinery beeped routinely. Thankfully, I noticed and was able to calm her down and help her understand the normal noises in the room. This stressful situation and many other things could have been addressed at the beginning of the week, rather than in a crash course at the shocking end. The patient passed after my shift ended that day.

The third patient was a 35-year-old woman who had become unconscious in an intimate moment with her new boyfriend. By the time paramedics arrived, she was not breathing and had no pulse. She was resuscitated and put on life support. Her parents arrived at the emergency room in distress. I soon learned she was also a twin who had an exceptionally close bond with her sister. 

When patients arrive at the emergency department, little is known about them and it takes time to find the underlying causes of their illness or injury. The result is that it takes time to be able to talk to the family and give the first meaningful update. I met her parents at the doors of the ER and kept them company. For the parents, the wait seemed eternal. The father had several intense outbursts and demanded to see his daughter. He stormed outside, was rude to an employee, and eventually punched a wall.

Finally, he learned that his daughter had an unexplained brain bleed. She was taken to the ICU and the parents waited while more tests were conducted. During this uncertain time, her family felt lost, unsure of what kind of medical care she would have wanted.

It is heartbreaking for loving parents to face the loss of a child, and the prospect weighed heavily on them. Blood clots in the brain can leave lasting damage and severely affect quality of life. If she had a choice, would their daughter choose extraordinary measures to survive? Would she risk a procedure that might leave her unable to speak or move? These were the questions weighing on the parents’ minds. Meanwhile, the doctors discovered a massive brain bleed and realized that only the machines were keeping her alive. The only question left for the parents was deciding whether they would want to their daughter to donate her organs? In the end, the parents decided that organ donation would make her life more meaningful.

Why advance care planning matters

That day left a deep impression on me. These experiences remind us that when our time comes, we all wish for the most peaceful transition possible. With a well-thought-out plan and clear and loving communication, my first patient had a calm, meaningful death. Her family felt aligned and supported. Those around her were not frightened or overly distressed, and were not struggling to cope with unresolved issues. There was no fighting in the family, and it was easy for them to understand the doctors. There was a kind of grace and peace in the room—the type of grace and peace we wish for our loved ones in difficult situations. Of course, they were sad, but they were not stressed by confusion in her care, misalignment in the family, or other unresolved issues.

In contrast, my second patient suffered repetitive, painful interventions that did not help him live longer or give him a quality death. The staff were stressed, the family was in shock, and there was little time to process the loss or to say goodbye. I have never seen a doctor sob except for that night, having hung up the phone after a half hour of begging the patient’s wife to return to be by his side. It cost tens of thousands of dollars for unnecessary care because no preplanning had occurred in a situation where comprehension was a barrier, and efforts to save a life that was at its natural end could not save that life.

Although my third patient probably did not suffer, her boyfriend was extremely upset when he left the hospital—something that even the best end-of-life plan could not have prevented. Her parents, who were already feeling overburdened, had no idea what their daughter would have preferred in terms of care. At a time when it is so difficult to think clearly, they felt lost and doubly uncertain because the daughter had never discussed her wishes with her parents. Throughout the extensive medical discussions, they found it difficult to control their feelings while bearing the burden of speculating about what their child might have wanted for herself. The very worst time to start these valuable conversations is when you are facing the potential loss of a loved one.

When our time comes, wouldn’t it feel comforting to know we’ve done what we can to create a graceful experience for ourselves and for the people we love? An advance care plan is not just paperwork; it is a promise to spare the people we love from extra heartache when life takes an unexpected turn. Yet so often younger adults do not have any plan. While many young adults feel invincible, accidents and sudden illness are more common than we think. Life can change in an instant. I wonder how we can best connect to help younger generations understand that advance care planning is not solely for the elderly.

Most people I meet want a peaceful death, with alignment among family and close friends, and medical care consistent with their values. Engaging in advance care planning gives us a better opportunity to do just that. The invitation to reflect on our brief existence and inevitable mortality is present in our spiritual and religious traditions, but it is not emphasized in modern Western culture. Buddhism actively encourage awareness of the importance of a calm exit. Our core studies in karma can drive us to take end-of-life considerations more seriously, but many of us have no plan. These stories remind us that the way we prepare for death deeply shapes the way we and our loved ones meet it. The Buddhist teachings encourage us to reflect on impermanence and to cultivate the conditions for a serene passing. The question now is how do we begin planning for a good death?

Practical steps

Advance care planning is the process of understanding, reflecting on, and discussing future medical decisions, including end-of-life preferences. An advance care plan includes specifying an agent or healthcare power of attorney to speak for you if you cannot speak for yourself. It is not just for the end of life, but covers any time you cannot speak for yourself and you need healthcare. It is like having an insurance policy. You hope you never need it, but if you do it can reduce stress and confusion for your loved ones and allow space for them to process the shock and grief.

Advance care planning is not just about paperwork; it’s an act of love, courage, and wisdom. In some US states, a document of specific directions is necessary because otherwise your agent has little authority. However, there is more than this to planning. For example, the conversation is key. It is essential to go through each step of the planning process for the best results for your care. Laws vary across states in the US, and across countries, making the process unique to where you live. However, the core considerations remain the same. 

Start by reflecting on your values. Honoring choices recommends asking yourself:

• Has anything happened in the past that has shaped your feelings about medical treatment?
• Do you have significant health problems now? 
• What brings you such joy that life would feel meaningless without it?
• What fears or worries do you have about your illness or medical care?

The next step is to think about your options for a healthcare agent. As in the case of the man who was resuscitated, it is crucial to choose someone who can handle the role. Ideally, you will choose more than one agent in case your first choice is not available at the time. Agents should function well under stress, be willing to handle conflict, be able to make difficult decisions, communicate clearly with doctors, and be willing to represent your wishes even when they differ from their own.

To ensure your agent can effectively carry out your wishes, it is essential to regularly have open conversations  with family and close friends. In 2018, according to The Conversation Project, a public engagement initiative, 92 per cent of Americans said discussing their healthcare wishes was important, but only 32 per cent had gone through with those conversations. A first step is to discuss your wishes with your agent and answer their questions. It is difficult to predict every situation that may come up, but an agent can be more confident if you have taken the time to discuss your values in general and then covered some specific examples. Family members and close friends also need to understand your decisions so that if you are unable to express them, they can accept the guidance of your agent and feel more at peace knowing your wishes. 

Spiritual considerations

Another part of this exploration is spiritual. For Buddhists, the quality of the dying process is often paramount. The first book I read that covers modern practical Buddhist considerations is Anyen Rinpoche’s Dying with Confidence, which includes a spiritual will that can help you reflect on some Buddhist considerations for care. The Tibetan Book of the Dead is also popularly recognized, however a number of well-respected Buddhist teachers have suggested that this is a resource better suited to advanced practitioners. 

In the last 10 years, a number of books have been published that directly invite Buddhists to reflect more on preparing for death and also offer a process to explore a good life in the context of preparing for a good death. Among the more well-known authors are Lama Zopa Rinpoche’s Heart Advice for Death and Dying, Christine Longaker’s Facing Death and Finding Hope, Joan Halifax’s Being with Dying, Frank Otaseski’s The Five Invitations, and Thich Nhat Hanh’s No Death, No Fear: Comforting Wisdom for Life. For chaplains and caregivers there is Awake at the Bedside, edited by Koshin Paley Ellison and Matt Weingast, and Bearing the Unbearable by Joanne Cacciatore. Finally, the secular author Ira Byock offers us simple and universal advice on end-of-life considerations in Four Things That Matter Most.

Beliefs vary by individual, and you don’t need to read any of these books. You can start with reflecting on your own beliefs. On a more practical level, if you want a calm, supportive atmosphere, here are some questions to consider:

• Should the atmosphere have a quiet, calm tone?
• Do you want sacred items in the room? Who will care for them?
• How do you want the staff to speak to you (i.e. loudly or quietly)?
• Can the staff pray for or with you? If so, what prayer styles are acceptable?
• How should staff enter or exit the room (for example, knocking loudly, gently, or not at all)?
• What are your views on leaving your body undisturbed for a specific length of time?
• Do you want a hospital chaplain or someone from your spiritual community to visit?
• Is there someone to speak for your spiritual needs? 
• Do you want your community to visit for prayer and chanting?
• What prayers, chants, or rituals do you want? Can they be recordings?
• Are there other activities you need at the end of life?

It is important to have clear, concise, and actionable requests in your advance care plan. If I experience prolonged hospitalization or am in a nursing home, I would want my spiritual community to visit. I also would like my root teacher to be contacted at the end of life or in any situations which seem especially ambiguous. There are practices that I would want to do and others I would like to request. My spiritual care instructions might become quite lengthy. Therefore, I gave brief instructions that I would want the doctors to know right away in the body of my document and specified a spiritual care coordinator as part of my decision-making team. Then I attached a longer spiritual care plan at the end of my document that could be used for longer stays or end-of-life care.

Some care requests may be difficult to honor. For example, Tibetan Buddhists may prefer that their bodies remain undisturbed for three days. Yet there are places where it is not legal to let the body rest for this long. We may not be able to control when the body is moved, however we can work with hospitals, hospices, and funeral homes to maximize the amount of time the body remains undisturbed and generally improve the care for a Buddhist who has recently become medically deceased. Staff can be trained in how to move the body respectfully and how to let it rest as carefully as possible, wherever its place must be.

Consider updating your advance care plan if any of these five “Ds” occur: a decade since your last update; a divorce; the death of a loved one; a new medical diagnosis; or a decline in your health. Pay special attention in the event of a divorce. People sometimes overlook updating their plan during this time. A heartbreaking situation may occur if the family encounters a bitter and estranged ex-partner agent overseeing a loved one’s care. Even under the best of circumstances, that ex-partner agent will feel out of touch with your wishes, may not be able to predict what you want, and can cause undue stress for the family or a new spouse, even with positive intentions.

Buddhists often belong to a spiritual community, yet their community members rarely talk about practical needs in death and dying. Nevertheless, these conversations are helpful because they facilitate connection and understanding in the community. Having a community of support can help us to develop better solutions to some of the end-of-life challenges unique to being Buddhists in the West. For example, we might work together to identify a funeral home interested in serving Buddhist practitioners. We can orient the funeral home staff to our needs and make their contact information available in our communities. 

Chaplains in the hospital setting are often considered interfaith and are expected, whenever possible, to help meet the spiritual care needs of all patients. Another option is for our local community members to provide short orientations to chaplain teams less familiar with Buddhist end-of-life needs. Of course, like any other spiritual tradition, Buddhist beliefs vary. Yet in my experience, providing just an hour of training and a set of brief resources on the various traditions within Buddhism can serve as an effective beginning for culturally sensitive pastoral care. 

The Buddha indicated that a healthy community has both lay practitioners and ordained monastics, and each have a specific role in supporting the other. Our community conversations regarding advance care planning must include unique considerations for our ordained sangha. Often, they travel far from their families and many have limited prospects for a healthcare agent. Since many non-Himalayan monastics lack sufficient community support for their basic needs, it is important to ask how we can be more supportive of them as they carry out their roles in our communities. In regard to advance care planning, we might explore if it is possible to establish a pool of willing and qualified agents in each of our countries that would assist if a Buddhist does not have a potential agent to manage their care. If resources permit, this could be offered for both monastics and for lay community members who lack a qualified agent.

Advance care planning is a journey that takes time and effort, yet moves us toward peace, harmony, and a sense of fulfillment. Planning requires us to consider our psycho-spiritual needs as well as our physical needs and contributes to our maturation as a person and as a practitioner. We are invited within the planning journey to tend to our relationships, practice skillful communication, and take responsibility for our death process. 

Within this journey, we can practice lessons from the Noble Eightfold Path, including but not limited to right speech, right action, and right mindfulness. Our kind words to family, friends, and agents will help our death process be more easeful for them in the ways that are possible. Engaging in advance care planning is a gift to ourselves and to our practice, as well as to all those who love and cling to us in this life.

Related features from BDG

Get Your Death Ducks in a Row
Dancing around Death: Meeting Denial with Courage and Compassion
At the Heart of Buddhist Chaplaincy
A Buddhist Chaplain for the Tibetan Community in Toronto
Toward a Multi-faith Vision of University Chaplaincy in America: An Interview with Reverend Greg McGonigle