Category: Death Education

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Living With Dying:

An interview with Syd Balows

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Our monthly column addresses the same set of questions regarding advance planning and end-of-life care to a variety of people in our community. Our intention is to generate discussion as well as collect information by exploring this one theme seen through multiple perspectives. Possibly we can develop a vision and next steps for our community!

This month’s interview is with Syd Balows who has lived at The Woods Retirement Community in Little River since 1999. He is active as a real estate broker selling homes only in The Woods. He is a charter member of the Death and Dying Group, which started in 2012 with 15 active members. In the Death and Dying group, there have been eight graduates and they all have received Gold Stars. Our current group ranges in age from 67 to 99 years old.

• In your experience in this community and your profession: What has been successfully advanced planning for?

Taking care of business! The 6 Ps says it all: Prior Planning Prevents Piss Poor Performance.

Our friend Sunny was also a founding member of the Death and Dying Group. She planned her dying process. She used VSED (Voluntary Stopping of Eating and Drinking). I spent time with her every day as she was going through the process of dying. Sunny had a list of 18 people she wanted to call and say goodbye to. I would dial the number and then hand the phone to Sunny. She would say, “Hi, I just called to say goodbye because I’m leaving this planet. You have always been such a kind friend to me.” Often times we were holding hands as the tears flowed as she was saying goodbye to her many friends.

Sunny made previous arrangements with a home funeral facilitator. Sunny had chosen to have a Celebration of Life party in her living room. Her cardboard casket was on a table awaiting decorations and wishes for a safe journey. She had a green burial in Caspar Cemetery.

When you make your own decisions you take the burden away from someone else. Be as detailed as you can be to avoid resentment with family members. Many siblings never talk to each other again because of resentments. Think clearly about what you give your beneficiaries. I have seen the men in the family get the business and the women get the furniture.

• What gaps do you see in advanced planning?

Honesty – being truthful about inheritance. If the dying elder changes their mind about who the family executor will be and doesn’t share that change with the family, the results can be a family breakup.

For example, David was told by his parental unit he would be the executor of their estate. The parental unit changed their minds about which sibling was going to be executor. They chose the oldest daughter, RN Ann, to be executor and daughter, RN Laura, to be co-executor. The parents signed all the right forms to make the change of executors but didn’t tell David that he was relieved of his duties. The elders didn’t want a conflict. He was really pissed!

Laura took care of Mom every weekend for four years. After Laura reached burnout, she asked Ann to become the new caregiver. Ann quit her job at the VA, moved out of her home into a suitable rental on the river and became the POA – power of attorney – for health care until the end of Mom’s life, four years later.

David and his sisters disagreed about whether they were to be paid caregivers for their parents, or if they were supposed to donate their time to the estate as co-executors. Because there was nothing spelled out in the legal documents that addressed these issues, it caused a family conflict.

• What have you seen work about end-of-life care?

Acceptance. Accept the things I can’t change. Change the things I can.

Community works. Like-minded people sharing space as we age “right on schedule.”

“Neighbors helping neighbors.” My dying group has had many graduates. We all got to help each other through the process and that has been great for our group. Get the paperwork done to say what you want it to say. “Say what you mean and mean what you say.”

• What gaps do you see in end of life care?

Our local medical system is not very dependable. The fate of the hospital and its chance of survival is having a huge impact on people moving here and people wanting to move away. We have a rural hospital that, to survive, must have an affiliation with a larger hospital group with deeper pockets. We need to have a Medicare-approved hospice, rather than our previous volunteer hospice. A Medicare hospice will serve the community better.

Real estate sales in The Woods in Little River has decreased because elders do not want to live in a community without medical service and a viable hospital. Election years are always bad for real estate.

Recruiting staff for the hospital is difficult for the same reasons that people do not want to commit to coming here if they do not know if their jobs are permanent. But people who live on the coast accept the fact that they will have less in the way of medical care than someone living in a city and plan accordingly. We know that we have to travel for care.

Elder financial abuse is rampant. I have heard of family caregivers removing jewels, a granddaughter set up a meth lab in an elder’s home, changed bank accounts into her name and brought in friends to live freely. There is no return of funds lost.

Many surviving spouses do not know how to deal with household finances. They need help or to have someone in charge to go through this phase. If the spouse who does know does not share the information, it is almost tragic because you have left that person paralyzed.

• Is there anything else you would like to add?

The aging process takes place every day and is frequently life-altering. It is a loss that you can no longer do today what you could do yesterday and that could be frightening. The quality of life is way more important to me than the quantity of life. Healthy aging requires acceptance of the reality of the living and dying process. Birth and death are the natural evolution of coming and going.

Death isn’t that bad a thing, because afterward there has never ever been even one single complaint.

Complete Article ↪HERE↩!

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How Does a Buddhist Monk Face Death?

If we learn to celebrate life for its ephemeral beauty, its coming and going, we can make peace with its end.

Geshe Dadul Namgyal

By George Yancy

This is the first in a series of interviews with religious scholars from several faiths — and one atheist — on the meaning of death. This month’s conversation is with Geshe Dadul Namgyal, a Tibetan Buddhist monk who began his Buddhist studies in 1977 at the Institute of Buddhist Dialectics in Dharamsala, India, and went on to earn the prestigious Geshe Lharampa degree in 1992 at Drepung Loseling Monastic University, South India. He also holds a master’s degree in English Literature from Panjab University, Chandigarh, India. He is currently with the Center for Contemplative Science and Compassion-Based Ethics, Emory University. This interview was conducted by email. — George Yancy

George Yancy: I was about 20 years old when I first became intrigued by Eastern thought, especially Buddhism. It was the transformation of Siddhartha Gautama to the Buddha that fascinated me, especially the sense of calmness when faced with competing desires and fears. For so many, death is one of those fears. Can you say why, from a Buddhist perspective, we humans fear death?

Dadul Namgyal: We fear death because we love life, but a little too much, and often look at just the preferred side of it. That is, we cling to a fantasized life, seeing it with colors brighter than it has. Particularly, we insist on seeing life in its incomplete form without death, its inalienable flip side. It’s not that we think death will not come someday, but that it will not happen today, tomorrow, next month, next year, and so on. This biased, selective and incomplete image of life gradually builds in us a strong wish, hope, or even belief in a life with no death associated with it, at least in the foreseeable future. However, reality contradicts this belief. So it is natural for us, as long as we succumb to those inner fragilities, to have this fear of death, to not want to think of it or see it as something that will rip life apart.

We fear death also because we are attached to our comforts of wealth, family, friends, power, and other worldly pleasures. We see death as something that would separate us from the objects to which we cling. In addition, we fear death because of our uncertainty about what follows it. A sense of being not in control, but at the mercy of circumstance, contributes to the fear. It is important to note that fear of death is not the same as knowledge or awareness of death.

Yancy: You point out that most of us embrace life, but fail or refuse to see that death is part of the existential cards dealt, so to speak. It would seem then that our failure to accept the link between life and death is at the root of this fear.

Namgyal: Yes, it is. We fail to see and accept reality as it is — with life in death and death in life. In addition, the habits of self-obsession, the attitude of self-importance and the insistence on a distinct self-identity separate us from the whole of which we are an inalienable part.

Yancy: I really like how you link the idea of self-centeredness with our fear of death. It would seem that part of dealing with death is getting out of the way of ourselves, which is linked, I imagine, to ways of facing death with a peaceful mind.

Namgyal: We can reflect on and contemplate the inevitability of death, and learn to accept it as a part of the gift of life. If we learn to celebrate life for its ephemeral beauty, its coming and going, appearance and disappearance, we can come to terms with and make peace with it. We will then appreciate its message of being in a constant process of renewal and regeneration without holding back, like everything and with everything, including the mountains, stars, and even the universe itself undergoing continual change and renewal. This points to the possibility of being at ease with and accepting the fact of constant change, while at the same time making the most sensible and selfless use of the present moment.

Yancy: That is a beautiful description. Can you say more about how we achieve a peaceful mind?

Namgyal: Try first to gain an unmistaken recognition of what disturbs your mental stability, how those elements of disturbance operate and what fuels them. Then, wonder if something can be done to address them. If the answer to this is no, then what other option do you have than to endure this with acceptance? There is no use for worrying. If, on the other hand, the answer is yes, you may seek those methods and apply them. Again, there is no need for worry.

Obviously, some ways to calm and quiet the mind at the outset will come in handy. Based on that stability or calmness, above all, deepen the insight into the ways things are connected and mutually affect one another, both in negative and positive senses, and integrate them accordingly into your life. We should recognize the destructive elements within us — our afflictive emotions and distorted perspectives — and understand them thoroughly. When do they arise? What measures would counteract them? We should also understand the constructive elements or their potentials within us and strive to learn ways to tap them and enhance them.

Yancy: What do you think that we lose when we fail to look at death for what it is?

Namgyal: When we fail to look at death for what it is — as an inseparable part of life — and do not live our lives accordingly, our thoughts and actions become disconnected from reality and full of conflicting elements, which create unnecessary friction in their wake. We could mess up this wondrous gift or else settle for very shortsighted goals and trivial purposes, which would ultimately mean nothing to us. Eventually we would meet death as though we have never lived in the first place, with no clue as to what life is and how to deal with it.

Yancy: I’m curious about what you called the “gift of life.” In what way is life a gift? And given the link that you’ve described between death and life, might death also be a kind of gift?

Namgyal: I spoke of life as a gift because this is what almost all of us agree on without any second thought, though we may differ in exactly what that gift means for each one of us. I meant to use it as an anchor, a starting point for appreciating life in its wholeness, with death being an inalienable part of it.

Death, as it naturally occurs, is part of that gift, and together with life makes this thing called existence whole, complete and meaningful. In fact, it is our imminent end that gives life much of its sense of value and purpose. Death also represents renewal, regeneration and continuity, and contemplating it in the proper light imbues us with the transformative qualities of understanding, acceptance, tolerance, hope, responsibility, and generosity. In one of the sutras, the Buddha extols meditation on death as the supreme meditation.

Yancy: You also said that we fear death because of our uncertainty about what follows it. As you know, in Plato’s “Apology,” Socrates suggests that death is a kind of blessing that involves either a “dreamless sleep” or the transmigration of the soul to another place. As a Tibetan Buddhist, do you believe that there is anything after death?

Namgyal: In the Buddhist tradition, particularly at the Vajrayana level, we believe in the continuity of subtle mind and subtle energy into the next life, and the next after that, and so on without end. This subtle mind-energy is eternal; it knows no creation or destruction. For us ordinary beings, this way of transitioning into a new life happens not by choice but under the influence of our past virtuous and non-virtuous actions. This includes the possibility of being born into many forms of life.

Yancy: As a child I would incessantly ask my mother about a possible afterlife. What might we tell our children when they express fear of the afterlife?

Namgyal: We might tell them that an afterlife would be a continuation of themselves, and that their actions in this life, either good or bad, will bear fruit. So if they cultivate compassion and insight in this life by training in positive thinking and properly relating to others, then one would carry those qualities and their potential into the next. They would help them take every situation, including death itself, in stride. So, the sure way to address fear of the afterlife is to live the present life compassionately and wisely which, by the way, also helps us have a happy and meaningful life in the present.

Complete Article ↪HERE↩!

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Study suggests overtreatment in end-of-life care despite POLST

Patients with treatment-limiting Physician Orders for Life-Sustaining Treatment (POLST) are less likely to be admitted to the intensive care unit (ICU) but may not always receive treatment that is consistent with their wishes, according to a study published online Feb. 16 in the Journal of the American Medical Association to coincide with the Society of Critical Care Medicine annual Critical Care Congress, held from Feb. 16 to 19 in Orlando, Florida.

Robert Y. Lee, M.D., from the Cambia Palliative Care Center of Excellence at the University of Washington in Seattle, and colleagues investigated the association between POLST orders for and ICU admission for patients receiving end-of-life care. The included patients with who had POLSTs, died between 2010 and 2017, and were hospitalized within the last six months of life.

The researchers found that of 1,818 decedents, 401 (22 percent) had POLST orders requesting comfort measures only, 761 (42 percent) requested limited additional interventions, and 656 (36 percent) requested full treatment. Patients with comfort-only and limited intervention orders were less likely to be admitted to the ICU; however, 38 percent of patients with comfort-only and limited intervention orders received POLST-discordant care. Patients with cancer were less likely to receive POLST-discordant care, while patients admitted for traumatic injury were more likely to receive POLST-discordant care.

“Lee et al have provided important new information about the relationship between POLSTs and overtreatment of patients at the end of life,” write the authors of an accompanying editorial. “These insights will assist clinicians in developing strategies to help ensure that hospitalized near the end of life receive only those treatments that are both desired and beneficial.”

Complete Article ↪HERE↩!

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Assisted dying is not the easy way out

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One in every five Americans now lives in a state with legal access to a medically assisted death. In theory, assisted dying laws allow patients with a terminal prognosis to hasten the end of their life, once their suffering has overcome any desire to live. While these laws may make the process of dying less painful for some, they don’t make it easier. Of the countries that have aid-in-dying laws, the U.S. has the most restrictive. Intended to reduce unnecessary suffering, the laws can sometimes have the opposite effect.

My work as a medical anthropologist explores the field of medicine from a cultural angle, focusing primarily on birth and death. Over the past four years, I’ve studied how access to a medically assisted death is transforming the ways Americans die. I have spent hundreds of hours accompanying patients, families and physicians on their road to an assisted death. And, I have witnessed some of these deaths firsthand.

This research has taught me one thing: An assisted death is not the path of least resistance. For many, it is the path of most resistance. Those who pursue it face a range of barriers, at a time when their health is rapidly declining. Some patients navigate these waters successfully and manage to secure the coveted bottle of life-ending medication. Others give in to the opposition or simply run out of time.

History of the laws

The country’s first right-to-die law, Oregon’s Death with Dignity Act (1994), came after a fierce, century-long struggle to give terminally ill patients access to some form of medical assistance in dying.

Legislators in Ohio and Iowa proposed the first two of these bills in 1906. Known as the “chloroform bills,” they envisioned the use of chloroform on fatally ill or injured patients to induce their death, but their terms were so flawed that they never saw the light of day. Other legislative bills – introduced in Nebraska in 1937, Florida in 1967 and Idaho in 1969 – met similar fates.

When a committee of lawyers, physicians and activists sat down to craft Oregon’s Death with Dignity Act in 1993, similar ballot initiatives had recently failed in Washington (1991) and California (1992). To appease vocal opposition, lawmakers laced the Oregon statute with a long list of restrictions and safeguards.

Unlike all previous proposals, the Oregon measure no longer allowed for euthanasia. That’s the act of injecting a patient with a lethal dose of narcotics. Under the law, patients would have to ingest the lethal dose themselves – a final protection meant to ensure the absolutely voluntary nature of their death. The act also introduced a 15-day waiting period between a patient’s first and second request, intended as a period of reflection.

It worked. Oregonians narrowly approved the measure, but a three-year legal stay prevented it from being enacted. In 1997, Oregonians reaffirmed their support for the act, and it became law. Since then, each state that has added an assisted dying law to their books has either followed the strict Oregon model or, in the case of Hawaii, added more constraints. Those include requiring a mandatory mental health exam and a 20-day waiting period in between requests.

The letter of the law

Unlike other countries that permit assisted dying, such as Canada, the Netherlands and Belgium, in the U.S. intolerable suffering and an incurable medical condition alone are not enough to qualify someone for an aided death. A patient must already be within six months of the end of their life – coinciding with the admission criteria for hospice. That means protracted degenerative diseases with open-ended prognoses like amyotrophic lateral sclerosis (ALS) don’t usually qualify, at least not until a patient’s breathing becomes severely compromised.

Every year, dozens of eligible patients who apply for an assisted death are so close to the end of their life that they die during the mandated waiting period. And by the time a patient becomes eligible for an assisted death, they may have missed the window when they are able to ingest the lethal medication. In contrast to their Canadian, Dutch and Belgian colleagues, American physicians cannot administer these drugs to their patients.

Lou Libby, a pulmonologist from Portland, Oregon, told me that the physical manifestations of many advanced neurodegenerative diseases bump up against this requirement. Again, consider ALS. Alongside their diminishing ability to breathe, patients with ALS almost always lose their ability to swallow.

“You have to be able to ingest the medication yourself. And here you have all these patients who can’t even swallow.”

As I learned during my research, the stress over their ability to swallow can provoke a great deal of anxiety in patients, particularly when it comes to correctly timing their death. Taking the medication too early means cutting short a life still worth living; waiting too long means possibly missing their chance. To have the kind of death they prefer, some patients choose to die earlier than they would have liked.

Cultural roadblocks

Despite popular backing for medical assistance in dying – seven in 10 Americans support it – the cultural stigma and moral ambivalence around these laws remain potent. Across the country, many religiously owned health systems decline to participate in their state’s assisted dying law.

In rural parts of Oregon and along the coastal corridor, where Catholic health systems often run the only hospital in town, patients routinely struggle to find two physicians who will approve their request, or a pharmacist who will fill their prescription. Many hospices refuse to cooperate with a patient’s desire to seek an assisted death, leading patients to feel abandoned. Many assisted living and nursing facilities still prohibit the practice under their roof, forcing patients to make alternative arrangements, sometimes at a nearby motel. In trying to reclaim control over the way they die, these patients often are being stripped of some of that control in the process.

Medical aid-in-dying will become an even bigger issue as baby boomers face the end of their lives. It is mainly older patients who want access to an assisted death. In Oregon, for example, nearly 80% of those who sought medical assistance in dying in 2018 were 65 or older. Boomers, as in many other aspects of their lives, likely will want more say over their deaths.

Assisted dying reframes how we, as a society, understand the potential of medicine, not as a way to extend life but to mitigate the process of dying. Patients who endure intractable, painful diseases sometimes reach a moment when the prospect of staying alive feels worse than the prospect of dying. At that point, the idea of having a say over the timing and manner of their death can bring enormous comfort. But few are aware of all the hurdles they must clear to exercise this kind of control.

Complete Article ↪HERE↩!

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Providing emotional support to people at the end of life and their families

How can social workers address difficulties in communication and help promote openness between professionals, service users, their family and other carers?

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All social workers may occasionally need to become involved in end-of-life care, even when most of their work lies in other fields. This may arise, for example, when a service user or a member of a service user’s family has a sudden fatal accident or commits suicide, or becomes aware that they or a close relative or friend is dying.

Practitioners may sometimes worry about being pitched into end-of-life care unexpectedly because it disrupts existing plans and may lead people to express powerful emotions. As a result, the situation or emotions may seem frighteningly out of control; indeed, this is one of the fears that many people have at the end of life.

Social workers can play a key role in responding to service users’ and carers’ feelings of uncertainty and lack  of control. We can also address difficulties in communication and help promote openness between professionals, service users, their family and other carers.

Communication is key

A common issue in the dying process is the extent to which service users and family members and friends are aware that they are dying; awareness develops through communication. Death and dying are often hidden in our society and are medicalised, separating them from everyday life.

Many people regard openly discussing someone’s death with them as inappropriate. This attitude may be characteristic of some people in older age groups and is also associated with the cultural expectations of some minority ethnic groups.

To help people and families with the end of life, practitioners need to be able to talk with them, and most people working in end-of-life care aim for openness. However, even if the person accepts that they are dying, some prefer not to talk about it, and their approach must be respected.

A useful approach to openness is to start from the service user’s or carer’s perspective. You can ask: “Can you bring me up to date on what you have been told by…(the doctor, nurse)?” It may also be useful to get a picture of their own assessment of their illness, and ask: “Have you noticed any changes in your condition?” Later in a serious illness, you could ask how they assess changes: “Would you say you are weaker today than last week?” To get a picture of how realistic their view is, you can ask: “What has happened that makes you think that?”

Being informed of a short prognosis often leads to a change in mood. Depression arises from focusing on the potential and actual losses, and anxiety arises from seeing the prognosis as a threat to plans for the future and relationships. Crisis theory (Golan, 1978) suggests that it may help if you can stimulate a sense of challenge, helping people to think through what they want to do with the short time they have left, reordering priorities. If you identify depression or anxiety, you could also refer the service user for medication to manage symptoms.

Completing ambitions and tasks

Although someone may know they are facing death soon, the end-of-life phase is often characterised by uncertainty: people do not know what is going to happen to them, or the timescale. Some people maintain hope by denial, but this may be unhelpful for them if they have tasks to complete, for example, writing a will or making care arrangements for their children after death. All hope contains a rational element, in which people look at the realities of their position, and an emotional element, in which they express aspirations or expectations.

People may wish to complete ambitions, such as swimming with dolphins, or taking a last holiday. They may wish to visit previous homes or favourite places. You can suggest possibilities to them if they have not thought of any.

Social workers can support the following aspects of emotional and psychological care:

  • managing the practical and emotional consequences of increasing frailty, a progressive condition or a life-threatening illness;
  • enabling dying people, their carers, families and communities to express and deal with emotional responses to the ‘bad news’ of a short prognosis and subsequent bereavement;
  • helping people look forward to opportunities remaining to them in their life, and helping them to live their life within their family and within a community;
  • helping people complete social and relationship ‘tasks’ (see box) and making other preparations for death;
  • spiritual care (sometimes provided by a minister of religion or chaplain).

Resolving interpersonal issues

Many people wish to complete interpersonal and social tasks in the time available to them, to bring significant interpersonal attachments to a satisfactory end. These are often about resolving four important interpersonal issues:

  • Saying goodbye to important people.
  • Saying “thank you” for care provided and “for putting up with me”.
  • Saying “I love you”, even if there has been a degree of estrangement.
  • Saying sorry for some real or imagined failing, or “I forgive you” for something that has gone wrong in a relationship.

In some cases, people may have become estranged from friends or relatives who are important to them, and it can be useful to ask: “Is there anyone who you would like to know about…(your illness, admission to hospital or care home)?” and to help to approach divorced or separated parents of children who may wish or at least be willing to see the service user for a last goodbye.

Supporting family and carers

Family members and informal caregivers make a significant and irreplaceable contribution to meeting the needs of dying people. Many dying people become increasingly dependent on family, friends and other caregivers for practical and emotional help. This is particularly an emotional labour for caregivers, as round-the-clock care interacts with their own feelings of loss and other priorities in their lives.

Social workers can help by arranging practical supportive services for carers as well as offering emotional and psychological support. This might include adult day care, respite care, home care, and education and social opportunities to improve satisfaction, quality of life, and reduce the feeling of burden. Sustaining families has the secondary gain of also helping the patient.

Preparing fully for someone dying is not possible, but you may be able to help people think through how they want to let go of the relationship, particularly if there have been difficulties with it. You could talk to them about what has been important in the relationship, how they will best remember the service user and the possibility of rituals of leave-taking.

A final cuddle or sexual act may be important. If a visit to the pub is not possible, a favourite beer together may be a substitute.  Information that may help people’s preparation includes: what happens to their body after death, negotiating legal requirements or what sort of funeral they want. Discussing these issues allows negotiation about individual and family preferences to take place. For others, focusing on what to do after someone has died feels inappropriate and contributes to feelings of guilt.

During the dying phase, the social worker’s role is to facilitate family members and carers to participate as they want. People often wish to be present throughout the last few hours, and hospitals and care homes usually call known relatives to the bedside; at home, carers and family members may need to be reminded to do this.

The dying person may disclose unknown relatives and friends, for example, extramarital relationships or estranged family members, and it is often a social work role to make contact. If the dying person and family agree, social workers may negotiate for them to have final contact with these relatives and friends.

It is also useful for social workers to think through their approach to providing bereavement care where a service user they are involved with is coming towards the end of life. The full guide considers different psychological and sociological models and approaches, and when they may be appropriate to use.

Complete Article ↪HERE↩!

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On Why We Should Talk More About End-Of-Life Experiences

By Christopher Kerr, M.D., Ph.D.

In many ways, the end-of-life journey is a culmination of an integrative process that distills life into its finest moments. It is about revisiting and rewriting the life scripts we have been handed, whether by chance or by design. That said, the voices and experiences of dying patients matter. 

Dying is more than the suffering we either observe or experience. Within the obvious tragedy of dying are unseen processes that hold meaning. Dying is a time of transition that triggers a transformation of perspective and perception.

If those who are dying struggle to find words to capture their inner experiences, it is not because language fails them but because it falls short of the sense of awe and wonder that overcomes them. They experience a growing sense of connectedness and belonging. They begin to see not with their eyes but with their unlocked souls.

What it all means is that the best parts of living are never truly lost. I am reminded of this when elderly patients experience the return of the mother or father they lost in childhood; when soldiers speak of haunting battles; when children talk of dead animals returning to comfort them; and when women cradle babies long lost to their touch. This is when caution vanishes and courage prevails.

What matters is not so much what is seen but what is felt.

As poets and writers have reminded us throughout history, love endures. When the end draws near, time, age, and debility vanish to give way to an incredible affirmation of life. Dying is an experience that pulls us together by binding us to those who loved us from the start, those we lost along the way, and those who are returned to us in the end.

In the words of Thomas Jefferson, “I find that as I grow older, I love those most, whom I loved first.” The dying most often embark on a hopeful journey in which they are embraced one more time by those who once gave their lives meaning, while those who hurt them drift away. Death is also a form of final justice, one in which the scales are balanced by love and forgiveness.

Having witnessed so much death as a hospice doctor, I can’t say that I fully embrace the notion of a “good” death. There is no such thing as a good death, only good people. Death and dying are merely extensions of what came before; we die as we lived. This cannot always be reconciled with happiness or goodness, particularly if the balance of one’s life had little to do with either.

Despite the tragedy, being a hospice doctor is uplifting.

Although I am often saddened by the tragedy and trauma that so many have endured, I remain amazed by the strength of the human spirit in its endless quest to heal what’s harmed or broken. For those denied fulfillment and happiness in life, it may be in that struggle that hope and grace reside.

Dying may be isolating and even lonely, but patients often find comfort in spaces where they can continue to express themselves, connect with others, and still matter. Long after the battle to overcome illness is lost, the dying continue to fight, but they are not fighting against, only for and toward. They fight to have relevance, to find meaning—right up until their very last breath.

Why else would people, bedridden and fading, find it in themselves to share their stories? Not the embellished versions we typically tell, but the real stuff that comes from having lived and mattered—from hard-felt pains, deep secrets, and distant losses to enduring love and wisdom regained. These moments, measured in days and hours, are not motivated by the possibility of future gain. They constitute a wished-for and self-generated ending.

Illness and tragedy naturally demand that we look inward, an artifact of our fight for survival and our innate resistance against mortality. As sickness begins to overtake the drive to live, there is a shift. The dying continue to cherish life, but not for themselves—for others. They express concern for loved ones, in gestures of kindness and hope, even as they say goodbye. Buried within their stories is the same awe-inspiring message, repeated again and again.

During the end of life, people have faith that their voices, softened or at times silent, mattered. And that they would still be heard.

Complete Article ↪HERE↩!

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Working in Hospice Changed My Perspective on Death

“Like many physicians, I’d never considered that there might be more to death than an enemy to be fought.”

By Christopher Kerr

Tom was only forty when he arrived at Hospice Buffalo with end-stage AIDS. Unlike most of my patients, he was not surrounded by loved ones. Not a soul came to visit, ever. He was rather stoic, so I wondered if the absence of visitors was his choice rather than an indicator of his loneliness. Maybe that was his way of refusing to give death an audience.

I was puzzled but, wanting to respect his privacy, did not inquire. Tom’s emaciated body showed traces of once-chiseled muscles. He had kept fit and was still quite young, which gave me hope. In light of his age and physical conditioning, I thought that his body would be more likely to respond positively to life-prolonging treatment. Not long after he was admitted, I went to the nurse’s station and decreed, “I think we can buy Tom some time. IV antibiotics and fluids should do it.”

The charge nurse, Nancy, had been at Hospice Buffalo for much longer than I had. She knew her job, and everyone looked up to her. She was also not one to mince words. Still, her response took me by surprise: “Too late. He’s dying.”

I said, “Oh really?”

She replied, “Yep. He’s been dreaming about his dead mother.” I chuckled awkwardly—equal parts disbelief and defensiveness. “I don’t remember that class from medical school,” I said.

Nancy did not miss a beat. “Son, you must have missed a lot of classes.”

I was a thirty-year-old cardiology fellow finishing my specialty training while working weekends at Hospice Buffalo to pay the bills. Nancy was an exceptional veteran nurse who had limited patience for young, idealistic doctors. She did what she always did when someone was out of their depth—she rolled her eyes.

I went about my business, mentally running through all the ways modern medicine could give Tom another few weeks or even months. He was riddled with infection, so we administered antibiotics. Because he was also severely dehydrated, I asked for a saline drip. I did all I could do as a doctor to prolong his life, but within forty-eight hours, Tom was dead.

Nancy had been right in her estimation of where he was on the downward slope. But how could she have known? Was it just pessimism, the numbing effect of having watched so many people die? Was she truly using a patient’s dream as a predictor of life-span? Nancy had worked in hospice for more than two decades. She was tuned in to aspects of dying I knew nothing about: its subjective dimensions. How patients experienced illness, particularly dying, had mostly been ignored throughout my training as a doctor.

Like many physicians, I’d never considered that there might be more to death than an enemy to be fought. I knew about blind intervention—doing everything possible to keep people conscious and breathing—but had little regard for the way any given individual might wish to die, or for the unavoidable truth that ultimately death is inevitable. Because it had not been part of my medical education, I failed to see how the subjective experience of dying could be relevant to my role as a doctor.

It was ultimately the remarkable incidence of pre-death dreams and visions among my dying patients that made me realize how significant a phenomenon this was, both at a clinical and a human level. As a hospice doctor, I have been at the bedsides of thousands of patients who, in the face of death, speak of love, meaning, and grace. They reveal that there is often hope beyond cure as they transition from a focus on treatment to notions of personal meaning. As illness advances, grace and grit collide and bring new insight to those dying and their loved ones, insight that is often paradoxically life-affirming. This experience includes pre-death dreams and visions that are manifestations of this time of integration and coming into oneself. These are powerful and stirring experiences that occur in the last days or hours of life and that constitute moments of genuine insight and vivid re-centering for patients. They often mark a clear transition from distress to acceptance, a sense of tranquility and wholeness for the dying. Patients consistently describe them as “more real than real,” and they are each as unique as the individual having them.

These end-of-life experiences are centered on personal histories, self-understanding, concrete relationships, and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond. They are about a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members, or seemingly insignificant details such as the texture or color of a loved one’s dress, the feel of a horse’s velvety muzzle, or the rustling sound of a cottonwood’s shimmering leaves in the backyard of a childhood home. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved.

Doctors owe it to their patients to incorporate this awareness into our practice. End-of-life experiences ought to be recognized as evidence of the life-affirming and inspiring resilience of the human spirit that drives them. They are proof of humanity’s built-in, natural, and profoundly spiritual capacity for self-sustenance and self-healing, grace and hope. They help restore meaning at end of life and assist in reclaiming dying as a process in which patients have a say. They also benefit those left behind, the bereaved, who get relief from seeing their loved ones die with a sense of peace and closure.

This subjective experience of dying is also a powerful reminder that beauty and love in human existence often manifest themselves when we least expect it. The patients who summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and hunger for air. Catheters, IVs, and pills may now be part of their every day, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological, and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also have pre-death dreams and visions in the context of which they display remarkable awareness and mental sharpness.

Herein truly lies the paradox of dying: patients are often emotionally and spiritually alive, even enlightened, despite a precipitous physical deterioration. The physical and psychological toll of dying may be undeniable, but it is also what makes the emotional and spiritual changes brought about by end-of-life experiences border on the miraculous. Doing justice to end-of-life experiences means accounting for this paradox, one in which death and dying transcend physical decline and sadness to include spiritual awakening, beauty, and grace. Or, as the title character in the acclaimed Tuesdays with Morrie puts it, “Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die.” This is also true of the dying process, which often functions as a summing up, culmination, and capstone, an opportunity to recognize and celebrate our humanity in all its complexity and dignity rather than just as an ending.

Excerpted from DEATH IS BUT A DREAM by Christopher Kerr, MD, PhD and Carine Mardorossian, PhD. Published on February 11, 2020 by Avery, and imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2020 by William Hudson, LLC

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