Stories of Suffering and Comfort at Death's Door

Due to the attention that my book, Raising Spirits:  Stories of Suffering and Comfort at Death's Door, has received through word of mouth, my health care lectures around the country, and national media, Amazon and my publisher made the work available on Kindle yesterday.  My great hope is that the book will help its readers be better able at coping with terminal illness by viewing end of life comfort, not only from a physical perspective, but from a spiritual one as well.

By the way, my most recent essay in The Washington Post, co-authored by my son Matt Goldberg of Collider.com, is entitled "How to Die in Oregon - Or How to Sidestep Hard Questions."  It aims at showing that the advocates of "Dying with Dignity" fail to address all the issues involved in enough depth.  Here's the link:  http://www.washingtonpost.com/blogs/guest-voices/post/how-to-die-in-oregon--or-how-to-sidestep-hard-questions/2011/05/27/AGJJPiCH_blog.html

In a recent e-mail exchange published in The New York Times, Joyce Carol Oates and Meghan O'Rourke spoke about how they coped with the loss of loved ones, a husband in Oates's case and a mother's in O'Rourke's.  Both said they turned to writing as a bereavement ritual, because more public forms of grieving felt impersonal, even intrusive.

No doubt many Americans feel this way because we are a society in which individual autonomy, for both liberals and conservatives, is prized, quite often at the expense of tradition.  Hence, "ritual," which to many smacks of some kind of external religious authoritarianism, is to be avoided at all cost.

So what does one do in a secular society in an effort at relieving pain and suffering associated with death?  Some seek out (not surprisingly) individual therapists while others, under the auspices of hospice grief counseling, turn to bereavement groups.  But whether going to a therapist's office on a regular basis or to a bereavement group once a week, these mourners are themselves participating in some form of ritual. 

Starkly put, as human beings in mourning, we generally cannot do right by our grief without doing some rite of mourning that is shared in the presence of others.  Traditional religious communities at their best provide just such a presence, with practices of consolation developed over centuries, if not millennia.

I want to speak about one more "end" at this point - the end of my blogging on this site.  From now on, I will post my thoughts on michaelgoldbergonline.com, at which I'll be writing about a broader array of topics.  There is, after all, more in life to talk about than the end of life.

Next Tuesday, March 22, I'll be speaking on two occasions at Vanderbilt University in Nashville.

First, I'll be be discussing providing end of life comfort with an invited audience of hospital and hospice chaplains.

Later that day, I'll be giving a more wide-ranging public presentation that addresses the question of "What Good Do 'Good Professionals' Do?"  The lecture will be held under the auspices of Vanderbilt's Cal Turner Program for Moral Leadership in the Professions.  My talk will take place at 4:00pm in Room 122 of the Vanderbilt Divinity School, 411 21st Avenue South, and it will be followed by a reception.  For more information, please call Ms. Michelle Bukowski at 615.343.5447.

Perhaps by focusing on the moral goods we may share in our communal life together, we each can a get clearer vision of the goods we might rightly hope to pursue as our individual lives draw to a close.

Looking forward to seeing some of you at Vanderbilt next Tuesday!

We've all heard the old saying:  "Time heals all wounds."  But as anyone who has been involved with hospice grief counseling - or who has been a griever knows - that's simply not true.

Plainly, there are some wounds that time never heals such as that caused by the death of a child when, for a parent, the order of the universe is reversed.  Alternatively, the universe can come to an abrupt stop when a spouse to whom one has been married half a century dies - even if the death follows a long period of coping with terminal illness.  The gash to the heart of the surviving spouse may likewise never heal.  In either case, we do well to use the word "heart-broken."

Indeed, less traumatic losses may never completely "heal."  As long as we can conjure up memories of loved ones, particularly good memories, there's an altogether likely chance that they will arise commingled with pain as well as joy.  More and more empirical evidence shows that there are no systematic "stages of grief" to pass through in some linear fashion but rather waves of grief that may wash over us when we least expect them.

Caring for the dying is hard enough; caring for their survivors can be harder still.  The worst thing we can say to someone who has suffered a death - especially when that someone is oneself - is: "It's time to heal and move on."  The complex relationships between spirituality and illness and between spirituality and death demand more than that kind of platitude.

The notion that providing end of life counseling could somehow ease suffering and even extend life seems paradoxical.  And yet, the data shows exactly those outcomes occurring when physicians take the time to have such discussions with their patients as part of their caring for the terminally ill.

On the February 4 broadcast of the PBS program, Need to Know, Dr. Atul Gawande, the  nationally-known Harvard surgeon and writer, reported the results of a study of patients with terminal cancer.  Of those who failed to have any conversations with their doctors about their end of life treatment - e.g., what sorts of medications, procedures, surgeries they did or did not want - two thirds were:

• More likely to die in hospital ICUs rather than at home;
• More likely to have increased suffering and decreased quality of life;
• More likely to have their families suffer major depression following their deaths.

In other words, where doctor-patient conversations had taken place as part of providing caring for the dying, some 30% of patients and families experienced less emotional and physical suffering.

Additionally, Dr. Gawande noted that in a different study of terminal lung cancer patients, when end of life discussions between physicians and patients had transpired, patients actually lived 25% longer than when such talks had not!

At the beginning of this year, as part of the new healthcare reform regulations, Medicare was supposed to reimburse physicians for taking the time to speak to their patients about their wishes at the end of life.  Unfortunately, the Obama Administration reversed itself in the face of screeds about "death panels."

The cost of this reversal will be high - and not just in the cost of caring for the five percent of Medicare patients who die every year while accounting for 25% of all Medicare expenditures.  The additional costs come in the form of often pointless procedures tied to unnecessary pain for those undergoing them.

By contrast, ongoing, truthful dialogues among physicians, patients, and families can constitute "life panels" that at the end of life not only ease suffering, but extend life itself. 

For hospital chaplains and hospice chaplains alike, one of the great rewards of their often heartwrenching work is the way patients astonish them.  I'm not primarily referring to the unexpected improvement among seriously or terminally ill patients that sometimes happens.  Instead, I'm talking about the way patients help in relieving pain and suffering among those who care for them by making us feel better.

For instance, many times I've asked patients who wanted a prayer at the end of our visit to name the one thing they would request of God.  In the beginning, I imagined that they would be praying to God to help their healing.  But as time went on, I learned that in fact, my patients would pray for everything but that.  They would pray for such things as the welfare of their loved ones, for the other patients in the hospital, and not least of all, and for all the professional caregivers who looked after them.

Make no mistake: suffering does not necessarily ennoble people; it can just as easily embitter them.  But there are some souls who, even in the face of death, have the spirit to bless others' souls and raise their spirits, too. 

In caring for the dying, I've often been confronted with the question, "How much longer do I have?"  My response? Just as nobody knows the exact moment we're going to enter this world, nobody knows the precise instant we're going to leave it, either.

Despite such end of life counseling, I've frequently encountered patients who, while still physically capable of venturing out from time to time, have nevertheless retreated into bed, lowered the shade in the room, and simply waited for death to come and take them.

In an effort to provide support for patients such as these - people typically overcome by the sort of depression accompanied with serious disease - I've asked them to talk about the kinds of activities that gave them pleasure before they got sick.  Some have talked about attending baseball games, some about seeing movies, some about going shopping.  (I've written about just such episodes in my book, Raising Spirits:  Stories of Suffering and Comfort at Death's Door.)  After listening to what my patients had to say, I've encouraged them to go out, when possible, and engage in such activities again while they still have the physical wherewithal to do so.

One recurring choice I've found among patients has surprised - and delighted - me more than any other.  Rather than choosing a trip to the mountains or the ocean for one last time, some people have answered that they would like to go to Vegas.  I never asked them about their reasoning.  Maybe they imagine that taking in a show or even experiencing the thrill of gambling might make them feel full of life again. Or, in my imagination, they might be thinking, "So what if I loose at the tables?  What are they going to do?  Kill me?"

Although I don't know what lay behind these patients' choice, I do know two things for certain.  First, my hospice team did everything possible to fulfill its patients' wishes, sending them off with the necessary medical supplies and contacts for the journey.  But second, and as important, because none of us knows the exact moment our lives might end, we each need to make sure we put in some moment every day that can lift our spirits and give us a reason to go on.

Some of you may have seen my article today in The Washington Post entitled, "The Spirit of Confidentiality and the Spirit of Steve Jobs."  (Here's the link:  The Spirit of Confidentiality and the Spirit of Steve Jobs) I argue that Steve Jobs, just like everybody else, has a right to his privacy when it comes to the status of his health - despite, e.g., shareholders' concerns about Apple's health.

As I ask in my article in The Post, "What about making public the health records of Tim Cook, Apple's COO, who will be in charge while Jobs is away? Going even further, why not make public the health records of all of Apple's top executives as well as of the members of its board of directors? And while we're at it, in a culture captivated by celebrity, why not publicize the medical records of anyone else deemed 'important'"?

As somebody who has worked in hospice and palliative medicine trying to help relieve pain and suffering, I know that there are different kinds of patients.  Some want visitors and other folks around them to give them end of life comfort.  Other people, however, prefer their privacy.  And when so many things have been taken away by disease, shouldn't the ill at least be given the choice of whether or not to be left alone?

The violence in Tucson has left our nation reeling in shock and sadness.  Is there anything that hospice grief counseling might have to offer?

Clearly, the sheer numbers of the killed and wounded in the event are horrific.  Nevertheless, as hospice and hospital chaplains know all too well, even a single death or trauma rarely stands in isolation in our psyche.  Rather, it remains stitched together in the whole web of memory of losses we have experienced throughout our lives.

Spiders feel their webs vibrate when a fly alights on them.  For us, the web of grief woven from all the prior deaths we have endured in life may begin to quiver with each new death we face.

So the shooting victims in Tucson, including assassinated Federal Judge John Roll and critically-wounded Rep. Gabrielle Giffords, set off profound sensations of grief in our web of national memory, recalling earlier episodes of violence against such political figures as President Kennedy, Dr. King, and President Reagan.

The wisdom behind end of life counseling is that if we can "take hold" of our grief by naming and articulating it, we can manage to overcome it and embrace life once again.

Today marks the first anniversary of two significant events in my life.  One will recede from my memory, but the other I will never forget.

A year ago today, I sent to my publisher the completed manuscript of my book, Raising Spirits:  Stories of Suffering and Comfort at Death's Door.  It recounts my experiences as a hospital and hospice chaplain helping people coping with terminal illness, even as I myself struggled to make sense of the connections between spirituality and death.  After all the time I had spent on the project, first in my chaplaincy work and then in writing the book and finding a publisher for it, I remember my exhilaration when I at last finished it.

But that feeling was short-lived.  That selfsame day, I learned of the death of the rabbi who had meant so much to me at a crucial moment in my life.

My father struggled for many years with mental illness.  In my senior year at college, some 700 miles away from where my family lived, I got a phone call.  It was the rabbi.  "You need to come home.  Your father has hurt himself."

"Is he dead?" I asked.

"Just come home," the rabbi answered.

I caught the first flight back.

No one met me at the airport - except the rabbi.  He was the one who told me my told me my father had died.  More important, he was the one who tried to comfort me at the end of my father's life.

Over the decades since then, the rabbi and I spoke by phone several times.  A few months before his death, he told me he doubted he had made a difference in anybody's life.  He was wrong.  He surely did in mine. 

My recollections of Raising Spirits may well fade, but my remembrances of what my rabbi did to support my spirit will never dim.

A story recently appeared about Christopher Webb, who celebrated his 57th birthday on Christmas.  Nothing remarkable about that - except that three years ago, Mr. Webb had been diagnosed with inoperable rectal cancer and given three months to live.

When asked how he had found help relieving pain and suffering and dealing with terminal illness, Mr. Webb's answer was simple:  "God."  Then he added, "Meditation."

Of course, Mr. Webb's meditation may not be precisely the same as traditional prayer, but it's still the kind of thing that scientific researchers have investigated with numerous studies focusing on the question:  "Does praying to God help healing?"  Not surprisingly, the results are inconclusive, reflecting the biases, implicit or explict, of the researchers and their subjects.

And what about God as a research subject?  My own thoughts and motives are mysterious enough to me, let alone God's.  If you manage "to change my mind," you certainly don't do it by taking out my brain, somehow massaging it, and then putting it back inside my skull!  Instead, you try, at best, to give me good reasons, or, at worst, to bribe or even threaten me.  And still sometimes, no matter how much I may love you, I may not change my mind.

And no matter how much I pray, nor how much God may love me, I'll never be able to escape death's eventuality, to change God's mind about the fact that my own death will come one day.  But until then, prayer may offer good support for the terminally ill - which, of course, includes all of us.

While no one knows for sure whether Christopher Webb's meditation and belief in God have lengthened his life, they undoubtedly have helped him in coping with terminal illness.  So in the end, all we can say with any certainty is "Happy Birthday, Christopher!"

Starting January 1, new Medicare regulations will have doctors reimbursed for discussing end of life treatment with their patients.  These conversations may entail patients and their families completing advance directives that could include their choice of forgoing aggressive life-sustaining measures.  As the word "choice" implies, such decisions would be voluntary on the part of individual patients and families - rather than mandated by some faceless government "death panel."

As those in hospice and palliative care well know, the new regulation may prove to be a huge step forward toward relieving pain and suffering.  Too frequently, patients lack advance directives making clear their choices regarding the path they want their lives to take.

Crafted in consultation with our doctors, advance directives can indicate just how far we're willing to go to extend our lives.  Crucially, they also give us the opportunity to state who we want to make life-and-death choices for us if and when we can't.  Again, no imaginary "death panel" bogeyman meddling with end of life treatment.

Instead, the new Medicare regulation may foster honest reflection - and dialogue! - about the direction we choose our life to take, particularly at our life's end.  In the process, coping with terminal illness and caring for the terminally ill may be enhanced for all involved -  not only for patients, but for their families and for their hospice and palliative care professionals, too.

Yesterday, the oldest member of my extended family, my great aunt, died at age 96 after a long, debilitating illness.  Earlier this year, her sister predeceased her at age 99.  Both were fortunate not only to have had good genes, but to have had close relatives who provided the best end of life comfort they could.

But right now during the holidays, dealing with terminal illness - and its aftermath - is difficult.  While others celebrate the season with still-living family and friends all around them, many of us may have only sad memories of good times and loved ones gone forever.  Is there some way for us to join spirituality and illnesses, or even spirituality and death, so as to find meaning that sustains us through "the season"?

Trying to deal with a flood of memories will likely drown us.  Better to latch onto one comforting bit of memory to keep our spirits afloat.  Perhaps there's a particular piece of music associated with this time of year that we enjoyed, some specific food, some special way of praying to God together, in other words, little things that we can bear and that will buoy us up.  Indeed, hospice chaplains and hospice grief counseling emphasize such simple, ordinary things as these because in the midst of darkest despair, they offer light and hope.

And isn't that what the holidays themselves do at this season? That is, across religions and cultures, they celebrate light despite the darkness and hope despite despair.  As for me, I won't focus on my great aunt's passing as signifying the last of her generation - one of eight siblings that included my dear grandfather - but on her gentle voice that barely ever spoke but that still lingers in my mind and heart.

Recently, in the Q&A following a health care lecture I had given on spirituality and illness, someone asked, "Don't you think that there are good nursing homes where the residents are happy?"  I looked at the 100 people sitting in the audience and inquired, "How many of you sitting here now want to die in a nursing home?"  Not a single hand went up.

Dealing with one's own terminal illness at home is likely hard enough; caring for a terminally ill family member in our home may be equally hard, both emotionally and financially.  But in a skilled nursing facility (SNF), coping with terminal illness and providing support for terminally ill loved ones become harder still.

Whatever euphemisms a SNF may use - including the word "home" instead of "facility" - end of life comfort can be in short supply among the facility's personnel who may well be understaffed and under-trained to furnish adequate care to the gravely-ill.  Even when hospice is involved, the actual administration of medication is usually left to the SNF staff who may not give it in a timely way to furnish the kind of pain relief so necessary to many seriously ill patients.  And even if the "med cart" does come by on time, how much time do such dying "residents" spend languishing in their beds by themselves?

Yes, there may be some "good" nursing homes, that, e.g., have smaller number of residents or that have smaller number of annual "dings" from state certification agencies.  But if possible, the best home in which to get excellent end of life treatment is one's own home or the home of a loved one, encircled by the best caregivers money can't buy - one's family and one's friends.

These days, we hear lots of people talking about taking steps so that their loved ones or they themselves can end up "dying with dignity," particularly when there is a need for relieving pain and suffering.  In such scenarios, a figure such as Dr. Kevorkian can take on heroic proportions.

But good hospice and palliative care can make the resort to such extreme measures unnecessary.  To be sure, caring for the dying can be difficult. Often, when there is a patient in a bed, there's another at the bedside who doesn't fully realize or admit their own suffering.  Consequently, we need to make sure we're not projecting our own suffering on to the patient's.  If an elderly spouse or parent is, for instance, suffering from dementia or Alzheimer's, how can it be that their own sense of their own dignity is being diminished?  Instead, the very fact that we do not abandon them - despite our own suffering when we see them - indicates our unwillingness to let them suffer the indignity of being alone in their illness.  It takes a huge amount of love, not to mention courage, to stand "at death's door" and affirm that we are still willing to provide such end of life comfort.

When it comes to alleviating ongoing pain, hospice and palliative care specialize in agressive pain relief.  Part of that care may well entail end of life counseling not only for the dying but for those who love them.  Such efforts can transform the moral choices and issues for the ill.  Surrounded by a circle of caregivers, it becomes no longer a matter of dying with dignity, but dying in dignity - the ring of respect accorded by other human beings who dignify one's life and death by their very presence.

A beloved relative of a friend of ours died recently.  As our friend sat day after day in the ICU waiting room, well-meaning people would come up and ask, "How are you doing?"  Although our friend didn't say anything, he thought to himself, "How the hell do you think I'm doing?  Somebody I love is dying!  My heart is breaking."

Hospice chaplains, and their counterparts in hospitals, know that frequently the best thing to do before speaking is to keep silent and wait to hear what the terminally ill, their families, and their friends have to say - and only then to answer accordingly.

In the end, though, giving support for terminally ill patients and their families is best shown not by our words but by our presence - by the very fact that in the face of sickness, pain, and suffering we come to be with them nonetheless.

Many people use the words "spirit" and "spirituality" as though they were mysterious and otherworldly.  But think of the this-wordly, everyday ways in which we talk about "team spirit" and "spirited horses."  Spirit, in this sense, refers to anything that makes for liveliness.  It's about what enlivens and animates us, about what gives us a zest for living, in other words, about what gives us a desire to live at all.

When we're seriously or terminally ill, our spirit to live can be can be dampened, if not doused altogether. We acknowldge that fact every time we visit someone sick and say afterwards, "They were in low spirits today."  Hospital and hospice chaplains try to help raise a patient's spirt when it has been taken hostage by disease, and in so doing to relieve their pain and suffering.  It's a large part of hospice and palliative care. 

My work as a hospital and hospice chaplain working with a variety of gravely-ill patients and their families is recounted in the narratives of my book, Raising Spirits:  Stories of Suffering and Comfort at Death's Door.