The Making of Secrets of Life and Death - Part II

In making the film series, Secrets of Life and Death, I was extremely fortunate to be able to interview two people shortly before they died. Rick Fields was a practicing Buddhist and the author of How the Swans Came to the Lake; A Narrative History of Buddhism in America. Tighe Foley was a young man with HIV. Rick’s willingness to be interviewed is not all that surprising. Contemplation of death is a Buddhist practice. Death is impermanence, the nature of all existence. Resistance to change is the source of suffering. Accept change, accept one’s own inevitable death and reduce suffering. I like Buddhism because it is practice-based, not faith-based. You don’t have to believe in God or an afterlife or anything to receive its benefits. Another part of the practice is being of service. Rick agreed to an interview even though he was barely two weeks away from his death as an act of service. He finished his interview saying, “You may as well spend your life helping people. What else is there for us to do.”

I believe that Tighe Foley also wanted to do something meaningful when he agreed to be interviewed for the film. Although a practitioner of the San Francisco Church of Religious Sciences (now The Center for Spiritual Living), he also studied Buddhism. So he certainly absorbed many of its concepts about life and death. But I think his being gay was also part of his willingness to be interviewed. Because of HIV, because so many young men died from this disease, the gay community did a lot of work around dying. They did workshops with Anna Halprin and other therapists. They explored self-assisted death with the Hemlock Society. They wrote plays and did artistic works on the subject. There is a gay person in each of my three films. I think we owe them a lot for all the road maps and trails they have given to guide us.

A year into my filmmaking, I volunteered for hospice. I wanted to have more first-hand experience with dying. I also hoped it might provide some additional leads for my film. The results were so much more. Hospice is required by law to address both the spiritual and medical side of dying. Similar to the Buddhists, hospice provides a generic, nondenominational kind of spirituality that anyone can embrace. But here the focus is more on completing life, finishing up loose ends and saying goodbye. From hospice I learned about the communal aspect of dying – the family of the dying; the nurses, social workers, chaplains, volunteers, aids and others that assist the family; and the community of people I’ve met at team meeting, volunteer trainings and social event that support all of us in our work. It was such a relief to be around people who were not only comfortable with the subject but also understood what I was doing as a filmmaker. Hospice not only provided encouragement for my films but insight into why I’ve spent so many years of my life making and sharing them. It is, I have discovered, both a practice and a healing. But, you’ll have to wait for the last film in the series, Healing Loss, Helping Other, for that story.

The San Francisco Day of the Dead was another source of material for my films. It is one of the principal characters in the third film, The Heart of Grieving, but not as history or cultural underpinnings. There are no interviews here about the Day of the Dead, just emersion into its exuberance, celebration and embracement of death, in its parades, its costumes, its altars and other events. The Day of the Dead, brought to the Bay Area by Mexican immigrants many years ago and now thoroughly imbedded into San Francisco culture, teaches us a different way to deal with death. It brings death out into the open rather than hide it -- to play with it, to be creative, to immerse yourself, to laugh as well as cry. And that’s what it brings to my film.

Not all the people I interviewed make it into the films. This was not because they were unworthy, or their stories were not good enough, or they did not teach me something. They simply did not fit with the other stories that were central to the films. I recall, early on in the editing process, having a dream about a yard full of baby chickens running all over the place and my not being able to corral them. That was my film.

Originally I planned to make a single film with four parts. My editor, Elaine Trotter, the person I hired to tweak my editing and make the film more professional, told me that what I planned would not work. I would either have to rethink all my editing or break it into four films. I struggled with this information for months. I tried reediting and reediting. But each time the film lost something of its heart and so I would abandon it. Then, while co-facilitating a hospice support group, I decided to screen the films for the group members. They loved all four films. They told me to stop dithering and get them out, as is, four separate films. And that is what I have done.

I thank all the people who helped me make these films, particularly those who do not appear. I have learned from you all and I am grateful. And don’t be surprised if one of these days you find an excerpt from one of those neglected interviews streaming from my website, encouraging others to share in cyberspace and expanding the dialogue on this vast subject we call death.

The Making of Secrets of Life and Death - Part I

The film series, Secrets of Life and Death is, in way, a personal documentary about my own journey of healing and transformation after the deaths of my parents. Each film begins with my questions about some facet of the dying process and closes with my observations. In between are the stories of the people who taught me. The films do not pretend to have all the answers, only the answers that worked for me. They are simply a starting point, an invitation to others to share their own stories. This is my story. Does any of it ring true for you? What is your story and how is it different? Tell me so we may all learn from each other.

We are, most of us, uncomfortable with death. It is a difficult subject to explore, on or off camera. Being willing to be interviewed for a film, any film, is a matter of trust – trust that you will be respected, not misrepresented or misused. My focus on death took trust to another level. Death is secret, intimate, and private. In some ways it is a lot like how we used to be about sex, only without much promise of pleasure or titillation. Death is emotional, often unflattering and frequently downright ugly. Who would want to expose themselves that way? Not too many people. I got a lot of no’s, even from people working in hospice.

I began working on Secrets of Life and Death, with a single thread – a book called Who Dies. Shortly after my mother passed, a friend handed me the book and said it helped her when her father died. The book, written by Stephen and Ondrea Levine, was exactly what I needed. Death, it explained, is not failure, not a punishment for eating the wrong things, failing to deal with psychological issues or insufficient positive envisioning. Death is the culmination of life, the goal, the final passage of a spiritual being. And dying, the journey from life into death, is a profound time for healing and transformation.

A few months after I read Who Dies, I saw Stephen and Ondrea speak in San Francisco. I contacted them by letter. It was a bold move. I had just decided to make my documentary. It was my first and I could barely sputter the words, “I’m making a film about death.” Although they declined to be interviewed having recently retired from public life, they kindly pointed me in the direction of a whole cadre of death pioneer living in the Bay Area.

Ram Dass had worked with Stephen and Andrea in the 70’s to explore conscious dying through the Living/Dying Project. A decade later, Frank Ostaseski founded The Zen Hospice Project to serve the local homeless population and refine the spiritual practice of accompanying the dying. Expressive arts and movement artist Anna Halprin used dance to heal her own cancer then lead numerous transformative workshops for people with HIV. Rachel Naomi Remen, co-founder of the Commonweal Cancer Help Program, has been helping bring spirituality to the practice of medicine and treatment of cancer for thirty years. I contacted every one of them and each of them helped me either by being filmed or by referring me to others.

Early on in my interviewing process, I realized that I did not want to make a film of lecturing experts. I wanted personal experiences that came from the heart. I wanted a film people could connect with, that would take them deeper into their own feelings about death. I wanted stories they would remember. I was able to get this sort of personal revelation from Ram Dass and Frank Ostaseski and so they appear in my films, not as experts, but as people struggling with the challenges of death like anyone else.

In Part II, the journey continues with the others willing to address death -- hospice, Buddhists, the gay community and the San Francisco Day of the Dead.

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.