Dignity Therapy: For The Dying, A Chance To Rewrite Life : NPR

Dignity Therapy: For The Dying, A Chance To Rewrite Life : NPR.

One of the important pieces of working with the dying is to give them or their families an opportunity to rethink and relay their lives to others.  We are afraid that we will not have a legacy, and as such, some of our fear of death could potentially be alleviated through reflection and story telling.  There is a formal methodology for this, which is called dignity therapy.  Unfortunately, for many, reflection comes too late because of other concerns getting in the way, such as the fear of telling the person the truth because if someone knows he is dying, the person will get very depressed.  Instead, dignity therapy is a means of working through the depression to find a place of meaning that will outlast one’s life. 

For several decades, psychiatrists who work with the dying have been trying to come up with new psychotherapies that can help people cope with the reality of their death. One of these therapies asks the dying to tell the story of their life.

This end-of-life treatment, called dignity therapy, was created by a man named Harvey Chochinov. When Chochinov was a young psychiatrist working with the dying, he had a powerful experience with one of the patients he was trying to counsel — a man with an inoperable brain tumor.

“One of the last times that I went into his room to meet with him, on his bedside table was a photograph of him when he had indeed been young and healthy and a bodybuilder, and it was this incredible juxtaposition of these two images,” says Chochinov.

So in the bed there’s his patient — this skeleton of a man — very pale and weak. On the bedside table, there’s this portrait of a glistening, muscled giant. And Chochinov says that sitting there, it was very clear to him that by placing this photograph in such a prominent position, the man was sending a message: This was how he needed to be seen.

As Chochinov continued his work with the dying, he confronted this again and again — this need people have to assert themselves in the face of death. And he started to wonder about it…

“When you face death, it’s like facing a wall, and it forces you to turn around and look at the life that you’ve lived,” says William Breitbart, a psychiatrist at Sloan-Kettering Cancer Center in New York. He’s been trying to develop new psychotherapies for the dying. He says that many people have the wrong idea about the dying process.

“The prevailing mythology is that you die the way you live, and you can’t change yourself in any way,” says Breitbart. “The fact is that the last few months of life — because of the awareness of death — create an urgency that facilitates growth and change.”

This, he says, is why something like dignity therapy can be good. Though there’s no evidence that it relieves depression or anxiety, he thinks it can help us change in the very last moment of our lives. After all, he says, we’ve all lived imperfect lives.

“All of us fail, and the process, the task of dying, is to relieve ourselves of this guilt, whether it’s forgiving yourself or asking others to forgive you,” says Breitbart. “Or to remember your life slightly differently. But that’s the task of dying.”

As for Frego, she says she’s developed a strange relationship to the document her mother put together. Since her mother’s death, Frego says she’s actually carried the document around with her. She has the story of her mother’s life, always at her side, knocking around in the bottom of her bag.

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You Don’t Have to Believe in Heaven to Find Life after Death

When people first think about what will happen after one dies, it is usually in relationship to the afterlife.  Is there an afterlife and what does it look like?  While this is a deeply spiritual question that much ink has been spilled over, when it comes to this search among those who are dying, it is often times more about an immediate fear.  Before a person dies, they often worry about the legacy left behind and missing the major life events in the family.  In order to combat this particular fear, professionals will suggest some form of written or graphic form of leaving a legacy.  As you can see below, I have included a recent posting about leaving behind some keepsake for the survivors. 

Legacy can refer to the totality of a person’s life, or to the impact or influence of our lives in the world. For those near the end of life — and for their loved ones — legacy building offers powerful comfort at the end of life. It provides a way to ensure a continuing presence in this world and to leave something meaningful behind.

Psychologist Erik Erikson hypothesized that a late stage of personal development is generativity: the need to create a positive legacy that lives on after death — to leave a part of the self to future generations to help guide their lives.

Legacy building provides a way to address fundamental spiritual questions: “How have I made a difference in the world?” “What is the value of my life?” “What is my place and purpose in the universe?

Typically, life after death implies going to heaven. A 2005 ABC News poll indicated that most Christians in the United States envision continued existence in a heavenly, other-worldly place after death.

However, the practice of legacy-building expands the way we think about afterlife.

For those whose spiritual worldview may not envision or emphasize a supernatural afterlife, legacy building can diminish existential anxiety about death. Legacy building provides “this-worldly” possibilities of eternal life through the indelible impact that we make on those around us. It provides hope of continuing existence through everlasting bonds or ongoing influence in the world.

In recent years, the practice of writing an ethical will has become a popular and useful tool to assure continued presence and influence after death. Ethical wills are documents prepared before death that contain reflections, blessings, instructions, personal histories, or values to be passed on to others.

Also, “living eulogies” can provide great comfort to those facing the end of life. Messages, emails and videos can be sent to people who are seriously ill. Friends and family members can share stories and reminisce about meaningful times. These testimonies of enduring connections and contributions are powerful affirmations of life and legacy.

Counselors dealing with end of life issues increasingly rely on therapies that involve legacy building. In reminiscence therapy, the counselor encourages a patient to recall and share memories and past experiences.

Dignity therapy involves life-affirmation and legacy-building. It is more directive and structured than reminiscence, as a “generativity document” is produced after sessions of recalling and discussing life experiences.

Life review therapy is deeper and more evaluative. Patients reflect on the meaning of their lives, and come to terms with difficult aspects of their past. Typically, this process involves reframing the past in order to more gracefully confront death and more effectively cope with the end of life.

Life after death is often conceived as mysterious and other-worldly, but it is not necessarily so. We create an enduring legacy through day-to-day existence — in who we are, in what we do, and in the totality of our lives. You don’t have to believe in heaven to find life after death.

(cross posted here)

What’s More Important to You, Quality or Quantity of Life?

Rev. Dr. Martha R. Jacobs: What’s More Important to You, Quality or Quantity of Life?.

I have been following with interest the story of Desmond Watson, an 87-year-old who has advanced dementia and has been in the hospital in Canada for 14 months. He was admitted to the hospital in January 2010 with pneumonia. His wife of 69 years told doctors that he would want to keep living as long as possible. As a Roman Catholic, she says that he “would have wanted to be given every chance at life despite any suffering he may be enduring.”

“Desmond is suffering without any prospect of long-term improvement,” said one of Mr. Watson’s doctors. This doctor is quoted as saying: “Prolonging life and living are two totally different things … being kept alive in this way, I can’t imagine anybody would wish this … Mrs. Watson is entitled to her opinion but we need to be satisfied for ourselves that we’re doing the right thing … (We’re) not satisfied.”

In Ontario, they have a Consent and Capacity Board (CCB) that reviews cases like Mr. Watson’s. (“The CCB’s mission is the fair and accessible adjudication of consent and capacity issues, balancing the rights of vulnerable individuals with public safety.”) The CCB ruled that because Mrs. Watson (and her two daughters) expressed what she said were her husband’s beliefs, the hospital is required to continue treatment. Unfortunately, none of those caring for Mr. Watson ever asked him what his beliefs and values were even though the Consent and Capacity Board weighs the patients’ beliefs and values in their decisions.

Some of the questions that families have struggled with in situations such as this are: What is “living”? And is this a quality of life that would be acceptable to the patient? As the hospital’s doctor said, “prolonging life and living are two totally different things.”

I mentioned in my last posting that we need to determine for ourselves what our “bottom line” is. The question becomes: When is enough, enough?

And while money should not play a part in the decisions people make, we should at least be aware of the costs to our health system. For example, “Medicare, the health insurance program for the elderly, spends nearly 30 percent of its budget on beneficiaries in their final year of life. Slightly more than half of Medicare dollars are spent on patients who die within two months. Forty percent of Medicare dollars cover care for people in the last month.” This is amazing considering that when asked, most people say that they would prefer to die at home and not in a hospital. And yet, 56 percent die in a hospital and 19 percent in nursing homes. (Read more.)

What is more important to you: quality of life or quantity of life? And where do your religious beliefs come into this consideration?

I am presenting the entire post above so nobody will accuse me of bias by only quoting what I agree with.  Rev. Jacobs presents a story about a religious Catholic family that has a deep belief which is being questioned by the medical establishment, thus setting up an argument about whether their belief is antithetical to good medical care.  Unfortunately, we live in a society today which is beginning to downgrade patient autonomy, even with the increased advocacy for advanced directives and living wills.

If we examine the story closely, we will also see something else which is ethically challenging.  The doctor seems to be weighing his sense of non-maleficence, his desire not to do harm, to be greater than the autonomy of the husband and his health care advocate, his wife.  This is challenging because we want our doctors to act in our best interests as we perceive them to be (which is influenced by our culture, ethnicity and religious beliefs).  A doctor should be comfortable enough to know when the right thing to do is to step away when morally and ethically opposed to a form of treatment or non-treatment, but the doctor must also recognize the patient’s autonomy.

As a chaplain, the role in such a situation would begin by investigating with the family the source of their wishes.  Often, this might entail speaking with their clergy in addition to the health care proxy.  By ascertaining the specifics of their wishes and what is driving their wishes, a chaplain will be better able to provide clarity for all those involved, as in the patient/family and the doctor.  I have often found that many requests start of a place of emotional denial rather than from a place of religious and moral conviction.  This is not to say a person can’t be both in denial and yet feel very strongly about their spiritual and religious beliefs.  Rather, often times the family is struggling with the fundamental challenge of losing a loved one and are looking for something to grasp onto.

To deal with Rev. Jacob’s question of quality vs. quantity and how religious beliefs would play a role in that discussion, I would say both are important ideally. The question of quality vs. quantity of life is completely predicated on religious belief.  If we believe the human being to be a sacred being, both in mind and in body, then we encounter a true paradox.  For most of us, the thought of living without being able to interact as we do during our formative years is frightening.  Yet, even for those who believe in life after death, there is a base fear of life ending prematurely, no matter how old one gets.  Every religion struggles with this question.  There is no right answer to this question, and again, one’s beliefs will be influenced by one’s cultural, spiritual and ethnic background.

(crosspost here)

God Will Not Desert Us: Difficult End Of Life Conversations

Rev. Dr. Martha R. Jacobs: God Will Not Desert Us: Difficult End Of Life Conversations.

In her second installment, Rev. Jacobs discusses her advocacy for families to discuss end of life wishes and issues that might arise.  As we see below, while she stresses the need to be open, she doesn’t present a good how-to guide at this point.  I hope as her series continues she does address some practical aspects of this sensitive subject matter.  I want to stress again that while she is clearly writing to a Christian audience that has a specific theological view of the world, her primary theses are adaptable to other religions as well (though as I have been following her posts, it seems clear that Huffington Post could use someone to provide other cultural perspectives on death and dying.  Stay tuned for my response to a comment she makes about this issue in a subsequent post).

When there have not been conversations about what someone’s wishes are, it is more painful for everyone. It seems especially tension-filled for adult children when a parent is dying. Sibling rivalry rears its ugly head when children have to try to figure out what their dying parent might have wanted … and each sibling has their own, different take on this. These situations, unfortunately, engender arguments and fights at the very time the family should be there to support and comfort each other and their dying parent. Letting your family know your wishes mitigates much of this pain and tension.

Now, let me point out that I did say “wishes” — because that is what one can hope for — that their wishes be followed. That doesn’t always happen for a number of reasons, including loved ones not being able to let go of the person (most people don’t want their loved one to die), and medical personnel not always following what a person has requested in an advance directive. But, if you don’t have an advance directive and/or told those who love you what your wishes are, they can’t be followed!

As she makes clear, the goal of communication doesn’t guarantee that what a person wants will be fulfilled.  The real purpose is to have a base line to work.  Having said that, even the communication of wishes doesn’t always create a “good” death situation.  Sibling rivalry and arguments over interpretation can still happen frequently, especially when the person being affected physically by the wish is no longer capable of making decisions.  This is a place were having hospice care can be valuable, for now the hospice psychosocial staff can be a resource for the family and support the family in a way to hopefully find the common ground. 

So, the first step in this process is beginning to have “those” conversations with the people you love and are closest to you. I am not talking about “death panel” conversations; I am talking about honest conversations about how you want your body treated as you near death. You have the right to have everything done in order to stay alive as long as possible. You also have the right to not have everything done; to choose quality of life over quantity of life. But you need to let people know which one of those (or another scenario) you want.

As I wrote in my first posting, the greatest gift you can give to those you love is to let them know what your wishes are as to how you want your body treated as you near the end of life. It is also important to let them know what your bottom line is in terms of what you would want or need to be able to do in order for your life to have meaning for you. The bottom line will be different for each person and depending on your age, it may change. For example, I completed my first advance directive in 1991. I was in my early 30’s and at the time thought that if I could not do everything by and for myself and be able to resume all of the activities I had done prior to something happening to me, I didn’t want to live. Well, I am now 57 and my priorities have changed.

In this part of her post, Rev. Jacobs reveals the secret behind advanced planning.  Our thoughts change over time, and as I mentioned in my previous post, this is why families must confront these issues every so often.  It is not enough to have one conversation and be done with it.  Recognizing that, the idea of advanced planning becomes that much more challenging. 

As Christians we have a responsibility to ensure that our bodies are taken care of and we know that we do not have infinite life in our physical bodies, which are meant to break down (“from dust you have come and to dust you shall return” — Eccl 3:20). Adam and Eve did not eat from the tree of life, but from the tree of the knowledge of good and evil. (Genesis 3:22) So, we will one day die. And for us, as Christians, that is not the worst thing that can happen to us! We worship one who died and know that there is something greater awaiting us beyond this life. And that is where faith comes into the picture. Faith in God that God will not desert us as we are dying. As St. Paul wrote, whether we live or whether we die we belong to God. (Romans 14:8) Death is not the absence of God’s love, it is the fullness of God’s love. Jesus is with us in our dying and in our living. God’s love will never die, even as our human bodies fade away.

For patients and families of other religions, especially Judaism and Islam, the first part of this last paragraph is very poignant.  We all will die one day as a result of the sin in the Garden of Eden.  If we can grapple with that idea and accept that idea, then we can begin to focus on what it means to die. 

For Christians, additional belief in resurrection learned from the life of Jesus has its own sense of comfort as well as teaching.  This doesn’t mean that Rev. Jacob’s idea of death being another means of G-d showing love is unique to Christian thinking.  Rather, for Christians, the idea of love is recognized through Jesus. 

In general, religion has much to say about death and dying, though one doesn’t always encounter that in day to day religious life.  If we reflect on the general theme of our mortality, we should then be able to be freer in our conversing about it.  Until then, advocating for advanced planning of any sort, regardless of the politics, is almost mute. 

(crossposted at the Stein Hospice blog).

Confronting End of Life Issues

There is a new series of blogposts at the Huffington Post Religion page about issues in end of life care written by Rev. Dr. Martha R. Jacobs.  As they come to light, I will make remarks regarding them.  The first post is a general outline regarding facing the notion of our mortality.  As you will see, while she is writing as a Christian minister and will often reference Christian sources, the ideas and topics can resonate for all of us in some form.

Abraham Verghese, M.D., recently wrote an op-ed piece in The New York Times entitled, “Treat the Patient, Not the CT Scan.” Dr. Verghese pointed out that doctors are literally losing touch with their patients because they are looking at test results instead of at the patient him or herself. In effect, the patient becomes an “ipatient,” while the “real patient feels neglected.” The patient is looked at from the perspective of their disease or ailment or symptoms and not as being fully human…

The basic premise behind much of spiritual care is the idea that we are a composite of our bodies, minds and souls.  We are not just a body being treated for a physical ailment, but all physical ailments have corresponding spiritual and emotional ailments as well.  When we get sick, we become depressed, fearful, introspective, etc. 

As western thought shifted away from seeing the person as this composite, medicine did the same.  Doctors before the modern era were often spiritual healers as well.  While there is not a groundswell of thought to return to such a model, for it was flawed and lacked the precision of knowledge we have today, there is a general push in society that wants doctors to provide holistic care. 

We also need to look at ourselves as being fully human because a part of being human is the recognition that we will one day die. There is a 100 percent death rate in our world. And yet, there is silence on the issues that surround people as they near death. We need to accept ourselves as unique human beings who have fears and concerns about living and about dying. And we need to begin to have conversations about our mortality while we are still healthy…

Human beings both affirm and deny their mortality in the same breath.  In most religions, the daily liturgy contains references to death, often in relationship to resurrection in some future time.  While we say these words, we do not heed what the message is behind those words.  In a talk I gave to clergy about end of life care advocacy, I noted that as clergy, we are challenged with teaching people about our liturgy and what it means.  The problem is, if we ourselves don’t accept the inevitability of death, how can we possibly teach it to others. 

Their is much literature regarding the denial of death being something ingrained in each of us.  It can take years of meditative and contemplative practice to be able to sustain the thought of our own demise for more than mere seconds. 

I believe that the greatest gift we can give to our loved ones is letting them know what our wishes are as to how we want our bodies treated as we near the end of our life. Each person’s wishes are unique, so we need to tell those who love and care about us what our wishes are while we are still healthy. Conversations need to happen before we are wheeled into the ER, when it is too late to have “those” conversations.

Keep in mind that a conversation like this is not something that can be done randomly.  I do think that good communication within one’s family would be quite helpful, but while we often say things on the spur of the moment, it is important that families carve aside time once in a while to not only discuss end of life wishes, but to also make certain that those wishes haven’t changed (which they often do when a person or his/her loved one is in the moment as opposed to when they were talking in a more abstract context).  This is true regardless of one’s cultural and religious dictates regarding medical ethics, for in most families, there is not a single system of thought that runs throughout.  Families are diverse and as such, a religious child might not be comfortable with the wishes of a parent who is not religious.  Or parent and child have different rabbis or religious leaders who advise differently.  All of these situations should be discussed openly and honestly.  We are challenged with this task because death could come at any time and we must always make sure our families are prepared. 

She concludes with the aims for her column:

I will be using this column to educate people so that we can have end of life discussions while we are still healthy. I will include theological and sociological as well as biblical ways to look at and talk about sickness and end of life issues. I will also include various “hot button issues” such as the use or withdrawal of artificial nutrition and hydration, euthanasia and physician aid in dying. Further, I will write about the dying process, “do not resuscitate” orders, use of pain medications, reasons to have a completed health care proxy form and other topics that will hopefully spur you to confront your own fears and concerns about dying and death, so that you will feel more comfortable talking about these issues. My hope is that after you read my posting, you will be able to use it to open the door to conversations with your loved ones about what you would want done with your body as you approach the end of your life.

I look forward to your comments on my postings and hope that we can engage in a meaningful dialogue around our own “denial of death.”

(cross posted here)

The price of not talking about death

The most common myth about dying is that if we don’t talk about, it won’t happen to us.  We are all aware that everyone dies.  Nobody is immune from life.  As such, while we should not spend every waking moment waiting for death to arrive, we need to set aside time to consider how we want the end to look like, partially for our own spiritual practices, as well as the for the practical needs of one’s family.  The person dying often has less worries and fears than the surviving, especially the primary care providers, who feel that all their efforts are in vein.  The price of not talking about death describes the challenges that occur when people don’t talk about death. 

In the movies, people often die in some quick, dramatic way. There are bullets, train wrecks, serial killers, monsters, or, at least, exotic illnesses. If they die quietly, they almost always leave with a memorably pithy comment.

Many of us don’t know much more than that about death until it comes to live in our own house. Friends may lose family members, but they rarely talk about the uglier aspects of dying. We all conspire to protect one another – and perhaps our loved ones’ dignity – from the smells, sounds, and suffering that accompany the slow shutdown of vital organs. Why think about that until you absolutely have to?

But our reluctance to talk about the mechanics of decline and caregiving comes at a price. Ignorance can make first-time caregiving more frightening and disturbing.

“It would be a lot easier if we didn’t hide death, if we didn’t medicalize death, if there was a general acceptance and recognition of mortality,” said Lydia Dugdale, a Yale University doctor who wrote an essay on the “art of dying well” for The Hastings Center Report in December. She says bioethicists should “create a framework for teaching an aging population to prepare for death and to support one another through the dying process.” (I recommend reading her article for she presents a very eye opening look at the history of death, using the bubonic plague as a foil for the difference between our times and the rest of human history)

The rest of the article provides an overview of the dying process.  While everyone dies differently, there tend to be common signs.  If we become familiar with those signs before becoming caregivers, we will be better prepared for the randomness and feelings of lack of control that inevitably occur when someone we know is dying.

(crosspost at Stein Hospice blog)

Kenneth J. Doka, M.Div., Ph.D.: Helping Children Spiritually Cope with Dying and Death

Kenneth J. Doka, M.Div., Ph.D.: Helping Children Spiritually Cope with Dying and Death.

I recently had an opportunity to teach a Hebrew school class of 12 yr old children about death and Hospice.  I was amazed at how much these children knew about those two subjects.  Many of them had a grandparent or older relative cared for by a Hospice.  We discussed aspects of spirituality in relationship to death, including near death experiences and how the Bible looks at life and death.  In the piece I am linking to, Doka discusses how younger children can have a concept of death and how we should teach children about life.

As children encounter illness, loss and grief — whether their own or someone close to them — they seek to understand those events and to make sense of their experiences. This inevitably is a spiritual process as they turn to their beliefs, faith narratives, rituals and practices. They may not yet have the cognitive capacity to reach conclusions, yet they yearn for an explanation of events that are sometimes difficult, if not impossible, for even adults to answer. Their questions may show innocence and naiveté. For example, when her maternal grandmother died, my 3-year-old granddaughter took comfort from the belief that even though her grandmother was no longer physically present on earth, she would watch over her from heaven. However, this led to a very practical concern: Would her grandmother be able to see her on the toilet — a potent issue as she was becoming toilet trained? We reassured her that her Grandma would not look at her in these very private moments.

Children as young as 2 or 3 years old are trying to make sense of their world, and inevitably they are encountering their spirituality. Illness, grief and loss are often part of their worlds as well, so their spiritual development helps shape how they grapple with issues for which they want a concrete explanation. Often it is these questions — Why did grandma have to die? Why is there illness? What happens to you after you die? — that spur a child’s interest in spiritual questions and explanations…

Everyone has some set of spiritual beliefs even if they do not accept theism, or the practice of incorporating a belief in a higher power or God. It is important to share those spiritual beliefs with your child as well. For example, a parent might not believe in heaven, reincarnation or any form of afterlife, but that parent may still take comfort in the memories that he or she has of a person or find solace in a sense of pride based in the legacy of a deceased individual. Such memories and legacies can be remembered and celebrated.

It is also important to take care in presenting romantic explanations rooted in spirituality to a child, because children often interpret such stories literally. I once counseled a 7-year old boy who was acting out after the death of his friend — a death due to a car accident that this boy witnessed. He had been told that his friend was good and that God wanted him to be angel in heaven. This surviving child wanted to make it clear to the Deity that he would not be good material for any prospective angel. The romantic stories we may weave may do more harm than good. It is best to simply and honestly share your own spirituality with a questioning child.

Young children can have a concept of death, even if they don’t fully understand its permanence at such a young age.  We do a service to their intellectual and spiritual growth by not hiding this part of life from them.  Keep in mind that even if we don’t talk to kids, death is all around.  Between hearing about celebrity deaths and reading the stories in the Bible, which include death, it is something that can’t be avoided.  At the same time, we must learn how to be honest about death and dying in a way that doesn’t create falsities or situations as described in the last paragraph quoted above.  I find a good resource to be When Families Grieve, a video put out by Sesame Street.

(cross post at Stein Hospice blog)