The Good Short Life With A.L.S.

The Good Short Life With A.L.S. – NYTimes.com.

This piece is the kind of first hand account of dying that causes me to pause and reflect on the conflict we all face between wanting to keep living and yet not wanting to become a burden to others.  The author seems to say that he would rather allow nature to takes its course than to begin the various artificial means of prolonging life. 

As a Jewish chaplain who has tremendous problems with the idea of euthanasia/assisted suicide, I am challenged with a story like this.  If he were Jewish, would he be forced to have a tracheotomy because of the idea that every second matters?  Or would we accept that he does have a choice if that choice is coming from a desire to avoid further suffering?  I certainly empathize with the author, but am left with one additional question:  In the discussion of assisted suicide, one of the pieces often overlooked is post-death grief.  While the author is not saying he will avail himself of such a way out, it is still important to wonder about how the survivors will process the death when no means are taken to extend his life.  To me, I tend to believe that assisted suicide often leaves families scarred in ways that we tend to ignore in the face of the ill person’s suffering.  If we are intertwined, then both elements should be taken into account when decisions are made. 

I HAVE wonderful friends. In this last year, one took me to Istanbul. One gave me a box of hand-crafted chocolates. Fifteen of them held two rousing, pre-posthumous wakes for me. Several wrote large checks. Two sent me a boxed set of all the Bach sacred cantatas. And one, from Texas, put a hand on my thinning shoulder, and appeared to study the ground where we were standing. He had flown in to see me.

“We need to go buy you a pistol, don’t we?” he asked quietly. He meant to shoot myself with.

“Yes, Sweet Thing,” I said, with a smile. “We do.”

I loved him for that.

I love them all. I am acutely lucky in my family and friends, and in my daughter, my work and my life. But I have amyotrophic lateral sclerosis, or A.L.S., more kindly known as Lou Gehrig’s disease, for the great Yankee hitter and first baseman who was told he had it in 1939, accepted the verdict with such famous grace, and died less than two years later. He was almost 38.

I sometimes call it Lou, in his honor, and because the familiar feels less threatening. But it is not a kind disease. The nerves and muscles pulse and twitch, and progressively, they die. From the outside, it looks like the ripple of piano keys in the muscles under my skin. From the inside, it feels like anxious butterflies, trying to get out. It starts in the hands and feet and works its way up and in, or it begins in the muscles of the mouth and throat and chest and abdomen, and works its way down and out. The second way is called bulbar, and that’s the way it is with me. We don’t live as long, because it affects our ability to breathe early on, and it just gets worse.

At the moment, for 66, I look pretty good. I’ve lost 20 pounds. My face is thinner. I even get some “Hey, there, Big Boy,” looks, which I like. I think of it as my cosmetic phase. But it’s hard to smile, and chew. I’m short of breath. I choke a lot. I sound like a wheezy, lisping drunk. For a recovering alcoholic, it’s really annoying.

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.

No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.

I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.

And that’s the point. This is not about one particular disease or even about Death. It’s about Life, when you know there’s not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It’s liberating.

I began to slur and mumble in May 2010. When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.

It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. “I’m not prepared for this,” I thought. “I don’t know whether to stand here, get in the car, sit in it, or drive. To where? Why?” The pall lasted about five minutes, and then I remembered that I did have a plan. I had a dinner scheduled in Washington that night with an old friend, a scholar and author who was feeling depressed. We’d been talking about him a lot. Fair enough. Tonight, I’d up the ante. We’d talk about Lou.

The next morning, I realized I did have a way of life. For 22 years, I have been going to therapists and 12-step meetings. They helped me deal with being alcoholic and gay. They taught me how to be sober and sane. They taught me that I could be myself, but that life wasn’t just about me. They taught me how to be a father. And perhaps most important, they taught me that I can do anything, one day at a time.

Including this.

I am, in fact, prepared. This is not as hard for me as it is for others. Not nearly as hard as it is for Whitney, my 30-year-old daughter, and for my family and friends. I know. I have experience.

I was close to my old cousin, Florence, who was terminally ill. She wanted to die, not wait. I was legally responsible for two aunts, Bessie and Carolyn, and for Mother, all of whom would have died of natural causes years earlier if not for medical technology, well-meaning systems and loving, caring hands.

I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.

I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.

If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.

I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways. I just have to act while my hands still work: the gun, narcotics, sharp blades, a plastic bag, a fast car, over-the-counter drugs, oleander tea (the polite Southern way), carbon monoxide, even helium. That would give me a really funny voice at the end.

I have found the way. Not a gun. A way that’s quiet and calm.

Knowing that comforts me. I don’t worry about fatty foods anymore. I don’t worry about having enough money to grow old. I’m not going to grow old.

I’m having a wonderful time.

I have a bright, beautiful, talented daughter who lives close by, the gift of my life. I don’t know if she approves. But she understands. Leaving her is the one thing I hate. But all I can do is to give her a daddy who was vital to the end, and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in Baltimore. I want to take the sting out of it, to make it easier to talk about death. I am terribly behind in my notes, but people are incredibly patient and nice. And inviting. I have invitations galore.

Last month, an old friend brought me a recording of the greatest concert he’d ever heard, Leonard Cohen, live, in London, three years ago. It’s powerful, haunting music, by a poet, composer and singer whose life has been as tough and sinewy and loving as an old tree.

The song that transfixed me, words and music, was “Dance Me to the End of Love.” That’s the way I feel about this time. I’m dancing, spinning around, happy in the last rhythms of the life I love. When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over.

It’s time to be gone.

Dudley Clendinen is a former national correspondent and editorial writer for The Times, and author of “A Place Called Canterbury.”

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 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.

BBC News – New post-mortem method developed

BBC News – New post-mortem method developed.

If this method of autopsy is feasible as a non-invasive method, would halacha now be more willing to allow for autopsy to study disease? “The conventional autopsy process can be distressing for the family and is opposed by some communities on religious grounds.”  For me, both of these points are quite fascinating.  In a time when we are debating the questions of autonomy vs. rationing care, we are still finding that people are working on means to be sensitive to the emotional and spiritual needs of the clientele.

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.

 

May The Brain Death ‘Controversy’ Die A Dignified Death,Rabbi Aaron E. Glatt, MD

May The Brain Death ‘Controversy’ Die A Dignified Death,Rabbi Aaron E. Glatt, MD.

For any of you who have read this op-ed, did you also feel a sense of anger after?  For anyone following the brain-death controversy, this particular opinion piece misses the boat completely.  The argument that many are floating against the RCA relates to how we should relate to the morality of giving and receiving organ donations in light of the psaq that brain-death isn’t a clear cut decision of the moment of death.  Instead, Rabbi Glatt has to get into a whole piece about the non-democratic nature of psaq, which seems completely irrelevant.  Besides, as a Rabbi once shared, no halachic argument can be made in the vacuum of the Beit Midrash.  If the argument cannot hold muster in practice, then the argument is not a true representation of the halacha. 

This controversy does not, and cannot, have a simple scientific resolution, despite what anyone may claim. Science does not and cannot answer metaphysical questions. The definition of death according to science is, however, open for debate and can change by popular vote of the appropriate academies or respective legislative bodies.

On the other hand, halacha is immutable, although its ramifications, based upon the available facts, may change. The “halacha lema’aseh” may in fact be different today than years ago for many issues, because of technological advances and/or better understanding of the problem. Halachic analysis requires taking the best scientific evidence available and using the halachic process to provide “lema’aseh” answers to real questions posed.
 
Based on this unbiased straightforward approach, indeed the only possible current resolution to the brain death halachic controversy is “Ailu ve’ailu divrei Elokim chaim.” There simply is no overriding clear-cut halachic reaction that all gedolim agree is the correct lema’aseh response. And that is the one incontrovertible fact that seems to be forgotten amid all the tumult. Therefore it is very sad for me to see this beis midrash “controversy” itself take on a life of its own…
 
Not every person (or rav) is entitled to a halachic opinion. Having knowledge in one area of science or halacha does not automatically provide expertise in another area. How much more so (kal va’chomer), then, the need for individuals to refrain from proffering opinions on matters about which they are not qualified. And the vast majority of Jews are simply not qualified to render a halachic opinion on brain death.

 
A very undemocratic viewpoint, I know, but one I heard echoed many years ago in a class by a great rabbi. One of the students commented that the Taz appeared more correct to him regarding a particular halacha. The Rav quickly responded, “The Shach is not losing any sleep” because you agree with the Taz.
 
One cannot simply vote and count up how many people think or feel a specific opinion is correct in the brain death controversy – it is an exercise in futility, even if all the voters have the title Rabbi or Doctor in front of their name. While politicians may do this (“acharei rabbim lehatos” in last week’s parshah), it does not mean we should poll the electorate and pasken accordingly.

One more issue is his misuse of aharei rabbim lehatot, for it does refer to majority decision making.  While it is true not everyone gets a say, it doesn’t mean halacha is not “voted” on and that the majority decision wins ala Beit Hillel and Beit Shammai as seen in Mishnayot Shabbat.

Doctors urged to be frank about advanced cancer patients’ odds, to help plan end-of-life care – chicagotribune.com

Doctors urged to be frank about advanced cancer patients’ odds, to help plan end-of-life care – chicagotribune.com.

The gist of this article is that oncologists are being encouraged to have conversations with patients about their treatments options, including the foregoing of aggressive treatments and just the provision of comfort, palliative measures.  A few quotes:

Patients don’t want to hear that they’re dying and doctors don’t want to tell them. But new guidance for the nation’s cancer specialists says they should be upfront and do it far sooner.

The American Society of Clinical Oncology says too often, patients aren’t told about options like comfort care or even that their chemo has become futile until the bitter end…

“This is a clarion call for oncologists . to take the lead in curtailing the use of ineffective therapy and ensuring a focus on palliative care and relief of symptoms throughout the course of illness,” the guidance stresses.

But it’s part of a slowly growing movement to deal with a subject so taboo that Congress’ attempt to give such planning a nudge in 2009 degenerated into charges of “death panels.”…

“There is going to be, over the next few years, a groundswell of people telling physicians, ‘I don’t want to go out in excruciating pain, short of breath, alone, surrounded by lights and sirens and people pounding on my chest,'” predicts Dr. Jonathan Weinkle, a primary care physician who advises the program.

“Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it…”

There is a general fear of planning for our end-of-life needs.  We often struggle with the recognition of the existence of death, and even for those who have accepted that death is inevitable, when facing one’s mortality, there is often an increased desire to avoid the topic.  People believe that if talking about death is avoided, then death won’t happen. 

As a Hospice chaplain, I often meet people who, even once they have decided on palliative Hospice care, still will not discuss their wishes out fear of depressing themselves or their loved ones.  While this is to be respected, I get the sense that a frank conversation would be of emotional benefit, and that the long term benefit would outweigh the short term verbalization of the person accepting his/her mortality.  Additionally, by the conversation being held with one’s physician, it could create a different dynamic that would be beneficial for the dying person.  Studies have suggested that people still have greater trust in their physicians, more so than for friends and family who offer advice.