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)

Mussar for Moderns – Thoughts to ponder

Mussar for Moderns, by R. Elyakim Krumbeim, sets out to discuss the idea of self-improvement, mussar through the eyes of a modern thinker living in a world in which psychology plays a primary role.  Instead of writing up a general review of this book, I decided that I would present some of my thoughts that I garnered from his book.

  • R’ Krumbein’s book, which originally was a weekly email shiur from VBM, is written for an audience that has some involvement in mussar study yet struggles with how to adapt that way of thinking into the Modern Jewish life.
  • His book, while not a how-to book, is a good introduction to Mussar ideas.  He presents a systematic approach, providing both general concepts and then specific areas that people should work on.  While he doesn’t always present a clear cut path for growth, R. Krumbein does begin the conversation on character improvement.  For a clearer picture of a how-to approach in today’s world, see here.
  • One of the challenging aspects of R. Krumbein’s work is his emphasis on individualized readings of text.  As an example of his thinking, he says: (Mussar is) “study who’s avowed aim is to learn how to live.  According to this definition, the aim of the author of the book is irrelevant; it is the goal of the reader that makes the difference (p. 14).” While I agree with R. Krumbein about the reader’s input and the reader’s goal, to separate out the authorial intent does someone a tremendous disservice.  If I understand the context of a passage I am reading, I personally believe that it would help me have a better grasp of where the passage is supposed to lead me.  This is a general contention regarding the use of academia in the Beit Midrash and whether authorial context is relevant when developing an idea.  The question reminds me of one of R. Aharon Lichtenstein’s (see here as well)most famous essays, Torat Hesed and Torat Emet:  Methodological Reflections, found in volume 1 of Leaves of Faith.
  • The reader needs to spend time on the text’s R. Krumbein quotes.  His eclectic use of hasidic and mussar texts to develop his methodology is refreshing.

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)

We are not enslaved

I found a fascinating discussion of the idea of being enslaved in my pre-Passover reading which I wanted to share.  The Netivot Shalom in his discussion of the haggadah discusses the idea of what we mean when we say in the haggadah, “If G-d had not taken our ancestors out of Egypt, we and our children and our children’s children would still be enslaved to Pharoah.”  The question that is posed is what does it mean to be “enslaved to Pharaoh” as opposed to any of our other exiles, when we were subjugated to different kingdoms and empires.  He answers that the slavery in Egypt was unique in that it was not just an enslavement of the body, but of the mind as well.  We are taught that the people had descended to the 49th level of Tumah and if they had stayed in Egypt longer, they would not have been redeemed.  In other words, the enslavement went beyond physical labor but was a spiritual enslavement as well.  The other exiles, as the Slonimer explains, were merely of a physical nature.  Hence, Egypt we would have remained enslaved if G-d didn’t redeem us, but not in any other exile.

After having read that, I came across the following from Chief Rabbi Lord Jonathan Sacks which echoed this sentiment (p. 14 Chief Rabbi’s Haggadah):

In the Kovno ghetto in the early 1940s an extraordinary scene took place on morning in the makeshift synagogue.  The Jews in the ghettto had begun to realize the fate that lay in store for them.  They knew that none of them would escape, that the work camps to which they would be transported were in fact factories of death.  And at the morning service, the leader of the prayer, an old and pious Jew, could finally say the words no longer.  He had come to the blessing in which we thank G-d for not having made us slaves.  He turned to the congregation and said: ‘I cannot say this prayer.  How can I thank G-d for my freedom when I am now a prisoner facing death?  Only a madman could say this prayer now.’

Some members of the congregation turned to the rabbi for advice.  Could a Jew in the Kovno ghetto pronounce the blessing thanking G-d for not having made him a slave?  The rabbi replied very simply.  ‘Heaven forbid that we should abolish this blessing now.  Our enemies wish to make us their slaves.  But though they control our bodies they do not own our souls.  By making this blessing we show that even here we still see ourselves as free men, temporarily in captivity, awaiting G-d’s redemption.’