A Time to Fight or a Time to Die? Part II

A recent New York Times Article: Helping Patients Face Death, She Fought to Live, tells the story of a 40-year old palliative care doctor who, when it came to her own end-stage cancer, was not able to follow the advice she gave her patients. She could not accept her impending death, did not get her affairs in order or sign up for hospice or other palliative support.  Instead, she took on increasingly more aggressive cancer treatments, when standard medical practice advised against it, in a desperate bid to stay alive. Her choice added substantial suffering to her final days and, because she refused to admit she was dying, her friends and family were never permitted to say good-bye. Did she miss out on dying well? Clearly for her, it was the only way to go.



The choice is never easy. How does one ever know when it is time to stop fighting and surrender to death? A good medical fight can add years to your life. My sister, a 14-year breast cancer survivor, is proof of that. The story of a friend of mine with pancreatic cancer is less clear. While she did survive most of the three additional years promised by her surgeon, she lost the ability to digest her own food, never returned to work, and spent much of her time in bed reading. Was it worth it in terms of the cost both physical and financial?  I think her daughter and husband would say it was. Knowing what she went through, I am not certain I would want to make the same choice. But then one rarely knows in advance the real impact of such medical decisions. Surgeons can be a bit hazy on what they mean by quality of life, giving a medical perspective rather than a clear picture of what it will be like to live  from inside. The question of what to do is further clouded by our mass cultural phobia about death. If there is no afterlife, which a large portion of the population believes or fears to be true, than the fight to continue living even a little bit longer might seem worth it whatever the cost.

Adding to the confusion about when to die is medical technology that can prolong life long after the body has lost it's own capacity to sustain itself; and by a medical system committed to preserving life; and by a reimbursement plan that encourages intervention over allowing nature to take its course. Treatment is reimbursable, dying is not. CPR, ventilators, heart/lung machines, blood pressure drugs, intravenous and stomach feeding can be wonderful and life saving tools when they snatch us from the jaws of death and restore us to our previous state of health. Less wonderful for the frail and elderly when ribs are broken and hearts are shocked in a final and futile attempt to stave off death, or when unconscious life is sustained in a "zone of indeterminacy" -- neither dead nor alive, while doctors equivocate over prognosis and families are unable to call an end to "heroic" measures. Still more disturbing is the macabre practice of warehousing patients, sometimes for years, in special hospital units on life maintaining equipment, because heroic measures saved them from death, but in a condition too reduced in mental and physical capacity to ever reclaim independence or even conscious thought. Then the question of cost may give us pause. Would you want to live that way? For a stunning account of the impact of medical technology, Medicare reimbursement policy and the hospital system on the way we die, see Sharon R. Kaufman's book . . . And a Time to Die -- How American Hospitals Shape the End of Life.

Once again I invite you to share your stories, thoughts and opinions. How far would you go to preserve your life? Do you believe in an afterlife? What are your fears about dying, if any? Do you have a medical directive in case you are unable to make your one medical decisions?

A Time to Fight or a Time to Die? Part I

When my friend, Marianne, had a recurrence of a particularly nasty cancer, she fought it for all she was worth. She was only 53 and not ready to die. Her oncologist told her it was time to sign up with hospice, instead she plopped down $4,000, crossed the Mexican boarder and returned with a bag load of experimental drugs. Unfortunately, she never could take them. She was already too sick. The doctor who facilitated this venture from his practice in San Diego failed to alert her to this fact. Such "experimental" or "alternative" doctors abound at the end of the line, exchanging hope for a pocketful of money.

She had cyber knife surgery to reduce one of her tumors and give her some additional time. It blew out both her kidneys and increased her chances of renal failure. The surgery may well have been palliative as the tumor was causing considerable discomfort. Whether it actually gave her extra time or reduced it, is anyone's guess. Over the next month, she entertained each of her three sisters and her brother in her tiny home and got to say goodbye.

Toward the end, her body kept swelling from lymphedema and she could barely walk. Yet she continued to hobble to work up until the day she checked into the hospital for the last time. Semi-coherent from an infusion of pain-killing drugs, she blurted out to a group of us that she still thought she might make it. She was finally moved to a hospice facility, mostly unconscious, three days before she died.

Three days is not much time for hospice to do its job. Hospice is about helping us die. And a lot of hospices are very good at this. A whole team of professionals come by your home to ease your suffering--nurses, social worker, chaplain, volunteer, home health aid. They work with pain of the mind and spirit as well as the body. There is no need for pain as there are many effective drugs, many effective strategies.

Dying can be a powerful time for healing and personal growth. See my film, Facing Death . . . with open eyes or read Ira Byock's book, Dying Well, for some wonderful stories about this process. Ira identifies four things people need to complete in order to "die well": forgiving others, asking forgiveness, expressing love and gratitude and saying goodby. Not too hard a list to remember, but not always easy to accomplish, especially if you choose to fight death until the bitter end. So many people do choose to fight, a little too long, until, like Marianne, they are no longer conscious. The average stay in hospice continues to be about two weeks even though a qualified person is entitled to up to six months. Medicare pays for it all if you're over 65 and many health insurance policies cover it for the younger crowd. It's a shame to lose out on this highly beneficial service.

In part two, I look at heroic measures to sustain life and the hidden costs of delaying death. Please share your thoughts and opinions about how we might best prepare for death.

Taking Care of the Caregiver

How can a caregiver maintain energy and spirit while caring for the dying? It is one of the questions we discuss at screenings of my film, Caring for Dying: the art of being present. Here are some tips:

1. Regularly check in with yourself. Take slow, deep breaths and look inside. How are you feeling? What do you need? Can you do anything that will help right now? This is an exercise we would all do well to practice even if we are not caregivers.

2. Take a mini-vacation. If friends and family are unable to help you with this, check out support organizations in your local community. Some may offer caregiver respite. Hospice volunteers can provide short-term breaks that allow the caregiver to simply rest. Once you have the respite in place, use it! Have a bath, take a nap, visit a spa, go for a long bike ride -- whatever helps.

3. Use modern technology. One woman advises texting daily updates to family rather than talking on the phone. After a day at the hospital, one is usually too tired to deal with phone calls. Texting fulfills the updating needs of family, instantly, with minimal effort. Cell phone are available with a keyboard, for the digitally-challenged.

When a close friend of mine was dying, I regularly emailed her support team and all the out-of-towners. It was not always easy to face my computer at 9 or 10 at night after a long visit at the hospital. Texting throughout the day might have been better, particularly since the verbal expectations are not as great as they are with email. On the other hand, I am happy to have all the details of a very special time, preserved in my messages.

Another person suggests setting up a facebook-type webpage where people can post photos, videos, family updates and stay in touch with the person who is sick, particularly when long distance precludes face-to-face visits. The website, Lotsa Helping Hands, provides an on-line calendar where friends and family can coordinate volunteered time and services with specific requests of the patient and caregiver, e.g. meal, coverage, transportation, laundry, house cleaning, etc.

4. For those less computer literate, designating a go-to-person is a simple low-tech solution. The go-to-person receives all the updates from the caregiver and then shares the information with any friend or family member who calls in.

5. See the links on the Resource page of my website for more information about caregiving.

These tips are just a start. Please share your own sanity-preserving techniques. What has worked for you? What didn't?

Caring Attorneys

Recently, I did a screening of my film, Caring for Dying, for a group of South Bay estate attorneys. I learned a couple of things worth passing along. The lawyers were not anything like the wizened, vampirish lot depicted in Dickens’ Bleak House, who drain away your inheritance in legal wrangling until there is nothing left. They are actually committed to creating a plan that not only satisfies the final wishes of the client’s but also reduces the squabbles among the heirs.

Of immediate interest to me, is the estate attorney's relationship with the dying. I had never thought about it, but dying is often the state of the client when he/she finally gets around to making an estate plan. The term “estate plan” rather than “will“ is the term in vogue as other inheritance vehicles like “trusts” have gained popularity. “Estate plan,” more general than the term “will,” also cleverly conceals its association with death. People, however, do not seem to be deceived and, like everything else related to death, put it off until it is unavoidable. My dear friend Marianne did not get around to her “estate plan” until she was in the hospital heavily drugged on pain medication. I suspect she believed that writing her will was tantamount to giving up on life, something she steadfastly refused to do until the very end. Fortunately, she lacked sufficient property to inspire any litigative greed; by the time she composed her will she lacked the “sound mind” required by law.

Establishing “soundness of mind” is one of the hurdles a client and his/her estate attorney must get past in creating a litigation-proof estate plan. If you wait until you are dying, really dying like Marianne, that can become an issue. Of course those of you with children are probably on top of this, since you naturally want to make sure your children are cared for in the event of an untimely death. But those of us who have no immediate heirs may feel indifferent to the task until death is poking us in the eyes. This is not the best time to be making such decisions. Dying can be a very exhausting process and not conducive to clear thinking.

Another important concept relevant to an estate plan is “undue influence.” Undue influence is basically someone hanging over you while you are writing your estate plan and convincing you that their ideas are superior to your own. Others' influence prior to the actual creation of the plan, such as months of caregiving or other service is fair game -- although it can become a point of argument in a lawsuit when coupled with the issue of “soundness of mind.” For this reason the responsible estate attorney should meet the client alone when discussing the terms of the plan. Meeting alone is not always easily accomplished when the client is ill and fragile and has come to rely on family for support and communication and/or the family see itself as the client’s protector. The estate attorney must navigate the choppy waters of family dynamics always remembering who the client is. If the client is slow in thought and words and a helpful child is willing to translate, the waters can become very muddy indeed.

The likelihood of a contested estate plan is greatly increased when substantial property is involved (i.e. enough property to warrant the expense of an attorney) and the division of property is uneven, or perceived as uneven, by the likely heirs. There are some tricks for discouraging litigation but even these are not failsafe. (see Phillip Campbell, Esq.’s article Bulletproof Estate Plans)

This concern about undue influence made me wonder about my own family experience following my mother’s death. While there was never any threat of litigation, there was plenty of dissension and even a family split that never truly healed. Might this have been avoided had my mother used an estate attorney instead of her attorney daughter? Certainly it would have cost more, but would it have been worth the price? There’s nothing quite like an impartial third person to reassure us that the plan, if not what we hoped for, was according to the wishes of the one who made it. Something to bear in mind if you have children.

What most humanized estate attorneys for me was hearing about their skill in balancing the social needs of their client -- which could be considerable after weeks of lying in bed -- with the more onerous task of creating the estate plan. California law requires that estate attorneys charge “reasonable fees” for their services. They simply cannot charge for all the hours they invariably spend at a client’s bedside, or the bill would quickly become unreasonable. One estate attorney recalled having to forfeit numerous weekends, while working for a large firm, to make up the “billable hours” that were lost while listening to client stories. I was impressed by her generosity and care for her clients and at the same time wondered if this balancing problem was specific to FEMALE estate attorneys. Might they not be more readily cast in the role of caregiver and taken advantage of? I could imagine a very business-like MALE attorney deftly silencing his client’s outpouring with a stern glance. But apparently I am wrong, it is a universal issue for all estate attorneys. When dealing with the dying, a certain amount of nonbillable time appears to be inevitable so that the necessary trust and required dialogue unfold.

Please share your thoughts and experiences with estate planning. Have you formalized any plans yet? If yes, how did you go about it? If not, how likely are you to use an estate attorney in making your plan?

People I Met at the Funeral Fair

As I promised, here are further details about the Green Funeral Fair that took place at Grace North Church in Berkeley last November.

Jerrigrace Lyons came all the way down from Sebastopol to extol the benefits of home-based funerals. Her organization, Final Passages provides workshops on a very low-cost, hands-on alternative to traditional mortuary services. I met Jerrigrace back in 2001, when I was interviewing for Secrets of Life and Death. Her explanation of the value of touching a loved-one's dead body came back to me when I went with my family to see my brother at the mortuary after he died suddenly and shockingly in May of 2008. She said that when you touch the dead you really get it, in a visceral way, that they are no longer present. So I touched my brother's serene face peaking out of a black body bag (this was not an official viewing). His skin was very cold. My eyes insisted he was only sleeping but my fingers assured me he was gone. And maybe because I touched him, others felt able to do the same. I think it helped. Jerrigrace has been busy training other people in her line of work, and some are even setting up shop in the East Bay.

There were a number of tables selling books about death. One in particular caught my eye called A Graceful Farewell by Maggie Watson. Its a workbook that helps you organize personal, financial, insurance, medical and legal information. A little daunting in it's scope and size. But, I am sure any caregiver and/or executor would be thrilled to have such important information so ready at their finger-tips rather than having to sort through a pile of unorganized files and envelopes.

Other end-of-life support services at the fair included, estate planning (you'll hear more about these unsung heroes in my next blog when I write about the film screening I did for estate planners in San Jose), geriatric care managing to organize the daily needs of aging parents and obituary writing for those who would like more than "born, died and succeeded by."

Of course there were funeral products galore: fully biodegradable Final Footprint eco-caskets by (did you know that cremation uses upward of 4000 megajoules of energy?); Green Burial Products; and high-end Funeria art urns and Memory Markers.

Also worth checking out is the Funeral Consumers Alliance which has a nifty little pamphlet on recycling medical equipment including those pricey pacemakers that are such a waste to throw away when they might be of great benefit to some needy person in the third world. Search on their website for "recycle medical" for the link to download a pdf version.

I wish I could tell you more, but I did have to spend some time at my booth.

Green Funeral Fair

After a month of speaker events on death, Grace North Church of Berkeley culminated their ground-breaking (pun intended) program with a Green Funeral Fair.

I shared a booth at the fair with the volunteer coordinator, Merry, from Sutter VNA & Hospice where I am a volunteer. She was pushing advanced care directives and telling people about hospice volunteering. I brought a laptop with my film trailers and some DVDs. Didn't manage to sell any DVDs, but met a lot of nice people.

Vendor booths were all upstairs in a large room. On display: eco-caskets, funeral shrouds, home-based funerals, memory markers, high end art object urns, obituary writing help, books on death, caregiving and organizing, and more. I'll be sharing more information on these booth in subsequent blogs. As a tease, I've given you a couple of links. Stay tuned.

In addition to the upstairs room with all the vendors, the church sanctuary below had a full day of events and activities including: mask making, coffin painting, sugar scull decorating, wheat weaving, paper-flower constructing, live music, a sing-a-long with the Threshold Choir and a funeral hat parade and contest which I participated in, but unfortunately didn't win. Too bad. It was a $150 prize. The woman in the black veil won. There was a prize for the men too. With only three male entries, a much easier competition.

I had a great time meeting all the vendors. You can see my photos on my facebook site for Secrets of Life and Death (I hope the link works, if not, just search for Secrets of Life and Death in Facebook).

Congratulations to Grace North Church on trying something very different. Hope they do it again next year.

Hierophant and the Ego

The hierophant card of the Tarot was the subject of a recent discussion I had with a friend, a Sufi dance teacher. She said she always draws a blank when it appears in a reading. Historically, the card refers to a traditional religious leader. It certainly did not fit with any idea she had of herself or her dance work.

A student of hers, an anthropologist, offered an intriguing interpretation of the card: the hierophant as the giver of blessings or benedictions. Benediction, in old sense of the word, suggests a dual motion of ascending prayers and descending blessings. Up and down, up and down between heaven and earth, a lot like breathing, only a celestial breathing. The hierophant, in this view, is the instrument or intermediary of the heavenly blessing or heavenly breath. While a much more dynamic vision of the card, I had some reservations. Below are my musings as addressed to my friend (with editing).

In the William Blake tarot deck, the hierophant is called Religion. It recognizes the human need for spirituality and warns against the rationalization or codification of spirit through organized systems of religion. Blake had no great love for organized religion. In the Sufi work (according to the work of Sufi Master, Adnan Sarhan), the dance must always come from the moment. As long as you stay in the moment, the energy of spirit flows. The hierophant card can be seen as a warning against "the ego,” the ever lurking enemy of the moment. As soon as one thinks of oneself as "something special," i.e. “religious leader,” the moment vanishes into intellect and ego.

It can be dangerous to see oneself as a mediator or intermediary between your students and heaven. It is really a very traditional view -- that ordinary people cannot connect to the sacred or divine except through the intercession of a priest or spiritual leader. People do not need a mediator because heaven is inside, not outside and above. We do not need an intermediary to the divine because we all are part of the divine.

When a teacher is in the flow of spirit and students are in the vicinity of that energy, their own spirits are entrained. That is the dynamic of the Sufi work as I understand it. When in the moment, one vibrates at a higher frequency. That vibration stimulates or induces a similar vibration in the others. Like plucking a guitar string, the near-by strings also begin to vibrate. The stronger your vibration, the greater the effect. Eventually the students learn to vibrate on their own and thus access their own spirit. Of course the vibration is always stronger when surrounded by the vibration of others flowing in the moment. This is doubly true when near to someone strong in the practice of being in the moment.

The trick and warning of the hierophant is to be a teacher and yet not fall prey to the ego of teacher. Yes, all of the things you must do as teacher are true, like holding the space and making people feel safe and stepping in and taking action when someone falls out of the space, or disrupts the space. So it is necessary to acknowledge your self as a leader or teacher. At the same time, it is heady to be in the front, having people attending to your every word and action. The ego lurks.

In a way we are all teachers. We teach each other important lessons every time we come together (as in The Celestine Prophecy). Being conscious of being teacher is essential, but in an active way, in the verb sense of "I am teaching" as opposed to "I am THE TEACHER." As teacher, which in itself is an active noun, one enters the energy field of teacher, which included space holding and wide attention. Teaching in this way can bring you into another level of consciousness. You attention is alert, you are totally focused and aware, but the focus is outward or, perhaps to put it better, your “inside” expands to encompass the outer boundaries of your group. The group becomes your body and you are the brain or maybe the heart of that body. There can be no thought of the future or past. You must be totally in the moment, feeling through every sense and responding to each moment through intuition or what Adnan calls “intelligence.”

When I am facilitating a grief group or doing a screening/discussion of my films, I connect with the essence of the goddess Demeter -- mother goddess, all encompassing, watchful, loving, insuring her children are safe and growing. When I think of her, I connect to the love part of teaching. As long as I am in that love and in the doing, I can keep the ego trap of the hierophant at bay.