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)

Grief from a Mussar Perspective

In the March e-letter from the Mussar Institute, Alan Morinis writes about grief and despair.  I want to share some of his thoughts (Mussar Institute – Through a Mussar Lens).

As much as we may be tempted to do so, we’re not supposed to seek distraction during shiva because our task at that time is to grieve, and grieving requires that we open up to our sadness.

Shiva, as with all Jewish rituals, is also an opportunity for spiritual practice.  While this is a practice one should not seek to experience, the need to grieve and experience sadness is the crux of Shiva.  Shiva is a time of reflection, not just personally but also communally, and laughter and happiness can be experienced through the lense of sadness of loss.  If you will, the happiness of shiva is the happiness within sadness ala the sefirotic intermingling fo sefirot i.e. Hesed shel Gevurah… 

… A broken heart will not kill us. In fact, we’re taught that a broken heart is a valuable thing.“The sacrifices HaShem desires are a broken spirit; a heart broken and humbled, O HaShem, You will not despise” (Psalms 51:19).

That is not to say that God wants us to be broken-hearted, but that in our times of sadness, it is spiritually beneficial and desirable to allow the heart to break and the tears to flow. We are encouraged to do this from the depths of our hearts. Or, to put it another way, we are taught here that being stoical is not a positive spiritual value in Judaism. When it is time for the heart to break, it is meant to be broken.

Allowing the heart to break is a surrender of will and ego. We try so hard to control our lives and, indeed, in many situations that is ideal. But the process of grieving is not helped along by asserting will over feeling. Giving ourselves over to grief is an act of courage in the face of the strong emotions that arise from loss. Opening wide the gates of tears means not being intimidated by the strength of those feelings. It means recognizing that they are part of the fabric of life, dark threads perhaps, but not contrary to life itself…

When we surrender the heart to its grief, we are being true to love and life. There is a limit, though. Despair is an extreme form of grief that does not bring about healing. Rabbi Yitzchok Hutner (1906-1980, late Rosh Yeshiva of Yeshiva Chaim Berlin in Brooklyn and a student of Slabodka Mussar) clarified the difference between sadness and despair. “Despair,” he said, “is being tired of living.” It’s a hopeless state, and that can’t be an attitude we would be encouraged to embrace on a journey of ascent. Right in the Torah, God says, “I place before you life and death, blessing and curse. Choose life.” (Deuteronomy/Devarim 30:15). To accept despair is to make the opposite choice. No matter how grim a situation that comes upon us in life, the spiritual challenge is to believe in life, to make that choice, and to hope, even as we cry.

 Grieving is a process of letting go of self and allowing one to be overwhelmed by sadness.  Yet, as a process, on some level Judaism makes it time bound to the periods of mourning as prescribed.  This does not prevent from experiencing grief outside the shiva or sheloshim, etc. but it does give one a potential formula for the process of grieving.  The use of this time for the spiritual practice of being broken-hearted and sad must be time bound as a means of framing the periods for practice.  A practice unchecked could be more dangerous than good. 

Here we come to a couple of Mussar practices that show us ways to sow seeds of life even while experiencing the deep pain of a broken heart.

The story is told about the mother of Rav Simcha Zissel Ziv, the Alter of Kelm. The Alter’s mother was renowned for her piety and scholarship. One of her practices was to pass among the crowd at a funeral to collect charity for poor people. When her own small daughter died, she did not change her custom and circled among the assembled during the funeral with her tzedakah box, saying, “Just because I myself am mourning, do the poor of the town have to suffer?”

The custom of giving charity while mourning is well established. The Talmud tells us (Bava Batra 10a) that tzedakah is stronger than death itself and, in that sense, overcomes the loss of death. Non-monetary giving can fit the same bill, if mourners contribute time and effort to helpful causes.

Giving for the sake of others is a “sowing of seeds” that lifts a person out of their sense of isolation and personal loss, bridging the gap from isolated self to another. It’s perhaps with a similar thought in mind that a mourner is not permitted to say kaddish alone, but only with a minyan of at least ten.

Another practice was given to me by my Mussar teacher, Rabbi Yechiel Yitzchok Perr. He once told me that at funerals, he thinks about the person who has passed away and reviews that person’s qualities, seeking to identify a trait in which that person was stronger than he is. Perhaps he sees that the person was more committed to performing chesed (loving-kindness) or patience or generosity stronger than him. It could be anything like that, and surely everyone has at least one such admirable quality. Rabbi Perr then commits to practicing that middah in order to strengthen it in himself. In that way, he honors the memory of the departed in a very concrete way that actually keeps that quality alive in the world. You could say that a part of the person has not died but lives on, now embodied in the person who has undertaken to honor him or her in that way.

Rabbi Eliyahu de Vidas writes in Reshit Chochmah that love is the merger of two nefesh-souls. Loss, then, is a tearing apart of that merged soul, and so the pain is very real. Grief is healing. So, too, are constructive actions taken to connect self to other, even amid the tears. 

The primary lesson from here is that grieving and sadness is a sign of living and experiencing.  While the practices might be challenging when one is a mourner, it is nevertheless of benefit.  The key here is that we should practice before we ourselves face the tragedy that is loss for if we become accustomed to an action, we might find a sense of nechama in that same action when we are grieving.  Grieving is not a time to shut the world out but it is a time to feel the pain and to begin reframing that now broken heart into one’s life.

crossposted at http://steinhospice.blogspot.com/

Kenneth J. Doka: Understanding The Spiritual Needs of the Dying

Kenneth J. Doka: Understanding The Spiritual Needs of the Dying.

Kenneth Doka is the senior consultant for the Hospice Foundation of America.  Every year, the HFA organizes a conference on a topic that relates to end of life care.  This year’s conference will focus on Spirituality and End-of-Life Care.  Excerpted in the Huntington Post is his introduction to this year’s conference. 

Do individuals become more religious as they die? This question has often been debated among academics who study death. Such debate avoids the central issue that the dying process raises profound spiritual concerns of meaning and connection for individuals. Whether those who are dying reconnect, review, or renew prior religious beliefs — or are even open to new religious experiences — they are likely to engage in some form of spiritual searching.

That search may be deeply religious or not, but it is always spiritual, and it can occur whether the person was traditionally religious or followed another belief system, whether the person was a humanist, atheist, or agnostic. Despite this reality, spiritual needs of the dying are often overlooked or ignored by family caregivers, clinicians and even clergy, who may be uncomfortable with spiritual searching by the dying and with conversations that may occur that have strong spiritual significance.

There are certain basic human needs that exist as long as we live — comfort, connection, and care, but there are also three distinct spiritual needs that arise as individuals become aware of their finitude, or the sense that their life is now severely limited.

The first of those spiritual needs is affirmation that the dying individual’s life has had meaning. We all would like to think that our life counted, that it mattered, and that at least in some small way, the world is different and maybe even better, because we were part of it. This often prompts an individual to perform his or her own life review process to affirm that life had meaning and value. For Erik Erikson, a developmental psychologist, a successful life review means that we can view life with “ego integrity,” or a satisfaction that we have lived a worthwhile life. The ultimate goal of life review is that one’s life should be a “good story.” If the life review is not successful, a dying person may perceive that his or her life has been wasted, leaving the individual with a sense of despair as death approaches.

To encourage the reminiscence that is an inevitable part of that life review process, friends and families can offer terminally ill person a gift of sharing old photographs, trading stories, or, if the person’s condition allows, facilitating pilgrimages important to the person’s shared past. For example, a family whose grandfather served in Korea might take him to the Korean War Memorial. A person who enjoyed the ocean can be driven to the beach to watch and listen to waves crash and smell the surf. Someone who enjoyed a particular tradition of a family feast, such as Thanksgiving, can be treated to flavors and smells that exist with that meal. Yet perhaps the greatest gift that can be shared in the life review process requires only honesty and communication and is achieved by letting the dying person know the ways that he or she influenced or affected our life.

In addition to the need for a life review to be a “good story,” the awareness of finitude often engenders concern with a second spiritual need: dying an appropriate death. This need is the desire to die in a way consistent with the individual’s values, wishes, or earlier life. On a practical level, this might mean that a dying individual is intent on instructing their adult children about their estate, advance directives, even their wishes about funerals and other rituals. These conversations can be difficult for families and others at the bedside, as it easy to fall into the “mutual pretense” that can accompany dying — that is, a shared pretense that it is not happening. Yet such a stance can often stifle the legitimate concerns of a dying relative that his or her dying wishes are understood and respected.

It is important to listen to the dying person’s needs and not impose one’s own fears, beliefs, or biases. There is no one way that we should die, because there is no correct way to die. The dying need not “accept” death, nor utter whatever “magic” words others think we might wish to say. Edwin Shneidman, a leading thanatologist (one who studies death), put it wisely — “no one has to die in a state of psycho-analytic grace.” Each individual will find his or her own way to die — consistent with the way he or she lived. To some it may be a peaceful, even graceful, acceptance of the inevitable. To others it may be to bitterly fight to the end — burning and raging, not going gently into that night. Still others will select Woody Allen’s dictum; “I don’t mind dying — I just don’t want to be there when it happens.” We need not impose our beliefs of a good death on those around us.

The third spiritual need of the dying is to find hope beyond the grave. A person may find this in complementary ways by finding comfort in faith, religion, and spirituality. An individual may take comfort in heaven, an afterlife, reincarnation, or some form of transcendence. There may be other ways that the dying reach for a form of symbolic immortality as well, including finding solace in the notion that they will return to the cycle of life or that they will live on in our progeny, work, and accomplishments.

The important thing is to remember the lesson that Dame Cicely Saunders, the founder of the modern hospice movement taught us. Dying is more than a physical event. Rather the experience reaches us on all levels — psychological, social, and of course, spiritual. We cannot neglect the spiritual needs any more than we can neglect the physical needs. Care for the dying is inherently holistic.

When dealing with people facing their own mortality, and by extension one’s family, it is best to provide people space and opportunity to share about life as they experienced.  With that said, for many of those receiving hospice care, they are no longer able to share about what life meant to them and what meaning they have in life.  This is a time when families can also begin the grieving process by reminiscing on how their loved ones affect their lives.  I quote the whole piece because it really speaks to the core of the need for spiritual support in end-of-life care.  Having people trained to help unlock meaning and provide people a space to share that spirituality is the core of chaplaincy.  To merely visit, spend a few minutes and pray, while certainly having value, is not the where chaplaincy really makes its mark. 

Chaplaincy work is the ability to recognize and help people explore their beliefs and their lives in reflection.  It is a role that is designed to close the gaps between the dying and their loved ones when there is a difficulty in communicating each others fears and tears. 

Death is difficult, regardless of one’s spiritual, religious and cultural mindset.  To prevent people from exploring what that difficulty is is a detriment to growth even during these final stages of life.  I often speak to my residents in the Assisted Living facility I work in about how one can continue to strive forward in life, regardless of age.  There is always a place to grow in spirit.  Being more “religious” for most people feels burdensome and is more difficult due to ingrained habits.  To change one’s response to others and how one lives and appreciates life is always something that can be accomplished.

The Cost of Dying: End-of-Life Care – 60 Minutes – CBS News

The Cost of Dying: End-of-Life Care – 60 Minutes – CBS News.

I recommend this clip, about 20 minutes long, about how end-of-life care can be less costly than many of the agressive therapies people avail themselves of in their older years in the attempt to live longer.  I will leave the politics of this clip to others. 

I want to focus on the issue of discussing cost when it comes to people’s lives.  In the medical ethics debates today, two of the principles used in arguing for or against a treatment are the questions of autonomy and distributive justice.  Distributive justice looks at the costs of something in relationship to the society’s ability to absorb the cost.  I always find that in the common rhetoric about hospice/end of life care as opposed to aggressive theraphy, the big point is that hospice care is a means of saving money.  From an emotional, psychological perspective, to talk about the costs of choosing potentially fruitless therapies or hospitalizations is what causes many people to run the other way from hospice care.  The logic is that if one is concerned about the cost of treatment, then it must be that hospice is not going to spend money and just let my loved one die. 

As we know, hospice does not act this way.  The goal of end of life care is not about saving money but it is about a changed perception of what care is appropriate.  Instead of more hospitalizations and treatments which cause physical and emotional stress, a person or family opts to be kept comfortable, meaning kept in a situation in which we care for the pain and suffering part of the terminal illness. 

In other words, people should be educated about hospice as an option when treatment’s are futile or causing more suffering than good.  This is the autonomy principle at work in conjunction with the other ethical principles of beneficence and non-maleficence.  The education about hospice as an option should also include discussion of choice, of how hospice can provide a better quality of life for a person, and how often times people who avail themselves of hospice improve for a while and potentially live longer than someone with a similar prognosis who does not avail themselves of hospice care.

Grief, Unedited – NYTimes.com

Grief, Unedited – NYTimes.com.

Grieving is often assumed to take a long time, a year or more, before people begin to full normalize their new life sans the deceased.  It seems, however, that for many older widows and widowers, it might not take more than a half a year to move forward in one’s new life.  Counseling the grieving means recognizing that if a person is not grieving in the manner we expect, we shouldn’t necessarily be concerned as perhaps they are further along than we would assume.  Also, since grieving is not done in set stages, we can’t box people in to moving forward step by step.

Misnomers about Hospice care

I was talking with a Rabbi this evening about hospice and Jewish law.  There are a couple of misperceptions which he shared that I thought were in need of clarification for people.

1.  Hospices get paid per patient and thus have no incentive to keep people on service for a long time:

From a financial standpoint, hospice is government funded through Medicare and Medicaid.  The way the funding works is that hospice is paid per patient, per day of care for the patient.  Therefore, it would behoove hospices to have patients on service for longer periods than just for a couple of days.  Being that it makes fiscal sense, it is sad to think that hospices do often act as if the goal is to provide a quick transition to death.  I think hospices need to rethink their approach in presenting to people what care is being given and its benefits.  People are still scared because they hear about how hospices stop all medications, etc.  Of course, hospices do stop medications that are counter to comfort care or have no effect on the person’s well being at this point.  In addition, many of the medications discontinued are only being taken because too many doctors prescribed too many things.  I have often witnessed how stopping the over consumption of medication can prolong a person’s life.

2.  Morphine is a problem because it shortens a person’s life:

Morphine is administered by hospices as one of many pain medication options.  Morphine’s primary function is to relax labored breathing.  Hospices are hopefully cautious in their use of morphine.  Additionally, rarely is a lethal dose given, especially if the hospice is managed by competent medical personnel.  Having said that, morphine has an unintended effect due to its ability to calm breathing, namely that a person might die “sooner.”  Since that is the case, people make the observational conclusion that morphine kills, leading to the fear of morphine use and the anger of hearing the hospice suggest such a measure.  From a halachic perspective, this is challenging, for while hastening death is considered murder, being that the quicker death was unintentional, it would be permissible to administer morphine.