Talking About Dying Won’t Kill You

(The title of a book by Virginia Morris)

UUCL - February 3, 2002

Brenda J. Davis

There are very few statistics that I could recite that would apply to each and every one of us in this church. But . . . recent statistics show that ten out of ten of us will die one day. Sooner or later it will happen to each one of us. It is not a pleasant thought and the emphasis and value in our society on looking younger, getting more out of life, and living longer just makes denial that much more palatable.

Every 8 seconds, a Baby Boomer turns 50 in this country, and this trend will continue through the year 2012. And you know how we Baby Boomers are, we fought for, demanded and won more control over our own bodies and destiny. We protested a war many thought was unjust and some refused to fight; we fought for the right to determine whether to carry a pregnancy to term; and we revolutionized childbirth in this country. So it makes perfect sense that we’ll do the same as we age and near the end of our lives.

According to the National Hospice Foundation, in the next 30 years the number of senior citizens in the US will DOUBLE to about 80 million, as baby boomers and their parents age. Trends in triple digit lifespan are also astounding - I was stunned to learn, according to the Kipplinger Monitor in March 2001, that the estimated number of Americans who are currently at least 100 years old is 67,000! No wonder Willard Scott has such a long list of the “100 and over” birthdays every morning on the Today show. As a woman, I was fascinated that 82% of those centenarians are women. And by 2050, the projected number of centenarians is 834,000. I think we need a whole other sermon on how we are going to care for these massive numbers of elderly Americans.

We used to die quickly from diseases that we now live with for months and years. Although we often equate these discussions with aging parents, for me - “End-of-Life” starts now. We are all moving toward the end of life. It could be tomorrow, it could be next week, next year or ten, twenty or fifty years from now.

And, as many of us become caregivers for our grandparents and parents as they age and die, we are learning how to navigate the complex health care system, and many of us are more determined than ever to be sure that our end-of-life experience is better. We’re Baby Boomers, and we are going to expect a frappe, latte, grande, decaf, skim, mochachino death! A fellow baby-boomer colleague of mine once said, “I don’t want to go to someplace called, “Asbury Village,” in my old age. I want to go someplace called, “The Yellow Submarine” where we debate over the issues of the day and finger-paint murals on the wall, and listen to music like the Beatles, Queen, The Who, Linda Ronstadt and Tracy Chapman, and - we embrace death as a normal part of the life cycle.”

When my grandmother died in 1999, before I became involved in end-of-life issues, I watched in horror as family members and doctors took actions which interfered with her wishes for a peaceful end-of-life journey in her own home. I have to admit that I was among the skeptics initially. I didn’t want my grandmother to die and I wanted “them” to do anything they could to keep her alive. But my mother, Nana’s primary caregiver, was aware of my grandmother’s wishes through conversations they had had during that last year. Nana was 90 years old and had experienced years of chronic pain. Her experience with the medical community had not been a good one. They did not take her complaints of severe pain seriously and consequently failed to treat it adequately for her to live her last 10 or so years of life comfortably. She did not want to be in the hospital and she certainly did not want to be connected to any machines that would simply prolong her death.

I want to just say a few words about pain management here. There has been some debate in the medical community and in society regarding the use of very strong, but very effective, pain medication for dying patients. Everything from fears of addiction to those who believe you must suffer with pain at the end of life because as humans we are meant to suffer. I already told you about my grandmother’s struggle with constant pain - and I read recently about a physician in Kentucky who had a patient last May, a parapalegic with severe chronic pain, who killed himself. The doctor, alarmed by official warnings about the prescription painkiller OxyContin, had drastically reduced his dose, leaving him in agony. As studies of the Physician Assisted Suicide laws in Oregon have shown, when good pain management is present, few people request assistance to die. Bad pain management is inexcusable when there are medications that do a good job of controlling pain, and in some cases, allowing a patient to spend their last days comfortable and able to communicate with family. Abuse of OxyContin is a real concern, but it should not preclude sick, hurting people from being properly treated.

I was pleased to see that The Unitarian Universalist Association issued “The Right to Die with Dignity,” resolution in 1988. Part of the resolution reads: That the Unitarian Universalist Association calls upon its congregations and individual Unitarian Universalists to examine attitudes and practices in our society relative to the ending of life, as well as those in other countries and cultures; [and that they] reaffirm their support for the Living Will.

In his book, “A Good Death,” Reverend Chuck Meyer wrote, “We began to use the newly developed machinery and seemingly miraculous medicines not just to sustain life but to prolong dying. Instead of seeing death as the natural, normal, expected outcome of overwhelming disease or accident (or simply old age) as our grandparents did, we medicalized death and began treating it as one more illness to be conquered by overwhelming it with vast amounts of medicine, time, and technology in an acute care institution or intensive care unit.”

After caring for my grandmother for a year during her slow decline, my mother realized she needed to take a break and care for herself. (as the flight attendants remind us, place the mask on yourself first so that you can assist others). She summoned the help of her youngest sibling, a sister who lived only about an hour away but rarely visited. As misfortune would have it, my grandmother took a drastic turn while in my aunt’s care and although instructed to contact Hospice, my aunt panicked and called an ambulance. Absent any written orders to do otherwise, they took her to the hospital and started giving her oxygen and made plans to insert a feeding tube and, eventually, send her on to a “rehabilitation facility.” My aunt was doing what her heart told her to do - save her mother. The physicians were doing what they were trained to do - save lives, be the hero, at all costs.

I was at a conference in Washington DC recently with the National Association of State Units on Aging, and one of their speakers pointed out that the second highest cause of financial debt in this country is end-of-life care, and as more baby boomers age and become ill, and medical technology continues to improve and find more ways to cheat death, we can be assured that it will remain a high cause of financial debt.

My mother traveled the 1500 miles back home, and brought nana home where she received good pain management through Hospice and died just two weeks later in her home, with her husband and daughter at her side.

The medical community is slowly coming around to accepting death (that sounds odd, doesn’t it?). But they are not trained in accepting death. They are trained to save lives. In fact, less than 2% of medical text book curriculum even mentions the issue of death.

My grandmother knew she was dying. It was a journey she had to make and she counted on the support and advocacy of my mother to achieve that. Like a midwife, my mother was her strongest advocate, helping her achieve the death she wanted - at home, with her family, and without pain. But my mother was fortunate that her other siblings did not fight her on this final care wish, because my grandmother never put it in writing. My mother told me that it was just something she could not bring herself to do. And my mother felt very awkward about pushing the issue.

Lest we think these issues are only of concern in old age, many of you probably remember the story of Michelle Finn, a young woman with two small children whose 36 year old husband had been in a terrible auto accident and was in a constant vegetative state in a nursing home in Manassas, Virginia. She and her husband had talked about these issues but had never put their wishes in writing. Her situation was complicated by the fact that her husband’s family disagreed with her decision to remove him from life support, and presented her with a legal challenge. As if that weren’t enough, the in-laws found an ally in Delegate Bob Marshall from Prince William County, VA - an extremely conservative Christian. Marshall was successful in gaining the support of then-Governor Gilmore. With the power of the state behind them, they went to court. Protestors stood outside the courtroom holding signs and calling Michelle a murderer. Suddenly, this private family decision had turned into a public debate and personal nightmare. She eventually won in court, but as a last effort to harass Michelle Finn, a representative from the State Coroners office went to the nursing home and told them that they were with the funeral home. They removed Mr. Finn’s body from the nursing home and took it to an undisclosed facility with the intent of performing an autopsy. The state refused to reveal the location to Michelle and her family. But Michelle’s attorney acted quickly and a judge issued an immediate order to return the body. Mr. Finn was finally laid to rest a few days later. Advance Care Directives or a Living Will would have saved her much turmoil and pain.

Advance Care Directives do more than just help family members make difficult medical decisions in these situations. It also provides an opportunity for you to communicate important messages to your family about what kind of experience you want at the end of your life. A great example of this is wish number four in the “Five Wishes” document called, “My Wish For How I Want People To Treat Me.” Some of the items on the list are:

· I wish to have people with me when possible. I want someone to be with me when it seems that death may come at any time.

· I wish to have my hand held and to be talked to when possible, even if I don’t seem to respond to the voice or touch of others.

· I wish to have others by my side praying for me when possible.

· I wish to have the members of my church or synagogue told that I am sick and asked to pray for me and visit me.

Before you approach a parent or other family member about their wishes, it’s a good idea to think about what your wishes are first. You do need to talk about this with family, but think first about what you would say to your children if they asked you about your wishes for end-of-life care. How would you react? Try to understand how your parents will feel and that will guide you in coming up with the best way to talk with them. Some people are afraid that their parents will think they just want to get rid of them, or ensure their inheritance. But when family members work together and speak from a position of love and ask for guidance in order to see that their wishes are respected - the conversation will be much easier.

So, on to the practical stuff. The first step is to complete an advance care directive. This includes a living will, which spells out the care you’d like if you can’t speak for yourself. Another key document is a health care proxy, which appoints someone to voice those wishes - your midwife, so to speak. This should be someone who you trust will be your advocate, who will be there and make sure your wishes are respected. It’s usually a close family member or spouse, but not always. Sometimes close family members are too close emotionally and find it very difficult to stick to decisions about removing life support and other very tough treatment options.

I have brought copies of the document I mentioned earlier called “Five Wishes,” a Living Will produced by a group called Aging With Dignity which offers a more detailed approach. I attended some focus groups that we conducted through my work on the Last Acts Campaign (an educational campaign to create dialogue and improve care and caring near the end-of-life) to identify the most helpful materials, and Five Wishes was by far one of the most popular tools. But there are many others you may find more helpful for your family or situation. I’ve also brought copies of the Last Acts Family Compendium of Resources (for which the focus groups were conducted). This was developed by the Family Committee to provide consumer/family resources for end-of-life care. It lists a number of helpful resources in the areas of Advance Care Planning, Caregiving, Funeral Planning, Grief and Bereavement, Long-Term Care, Pain, and Spiritual/Psychological resources. I would ask that you take one copy per family today, and let me know if you’d like additional copies and I‘ll be happy to get more for you.

Hollywood has joined in the quest for truth and dignity in end-of-life issues with the recent HBO special called, Wit, with Emma Thompson. After that film was finished, we hosted a premiere at the Union Station theater in Washington. We thought we’d have to fill the three hundred plus seats in the theater with family and friends - after all, who wants to hear about death. We were so surprised when the RSVP’s started pouring in. We had to schedule a second showing. I have a copy of the tape in the back and would be very happy to loan it to anyone who would like to see it. It provides a poignant look at how the medical community (and people in general) are in such denial about death.

There was also a wonderful four-part series done on PBS that aired in the fall of 2000 called, On Our Own Terms; Moyers on Dying, with Bill Moyers. This too provides a very candid look at the difficult issues around serious illness and accepting the end-of-life, as well as issues with the medical community. I would be happy to loan that out as well, or make arrangements for a group viewing and discussion group on end-of-life issues.

The Last Acts Campaign that I have been working on for almost two years, and have just accepted an offer to continue working on for at least the next 18 months, has also done some work to get our message out through television. We have a contact in California whom we affectionately call, “Our Man in Hollywood,” Bill. He has been successful in getting script writers to incorporate important end-of-life messages in shows such as Gideon’s Crossing, NYPD Blue and ER. Complicated issues like lack of access to pain killers for patients who live in high crime areas because pharmacists refuse to carry it because of the high risk of robbery. And issues of gay or lesbian partners not having the same rights in hospitals and the legal system when making decisions about their partners at the end of life. Not to mention all the language and cultural barriers that exist. For instance, in Hindu religion, the body must be washed in a certain order - so a Hindu patient may refuse a sponge bath because the hospital staff hasn’t asked if there are any cultural issues to be considered in the patient’s care. Or in a case of a Chinese woman who refused to leave her husband’s side, even when they came to examine him, bathe him, change his sheets, etc., because in her culture, she would be shamed if he died when she had left his side.

If we’ve learned nothing else from the events of 9/11, we should recognize that life is in a precarious balance and we can’t assume anything. As horrible as it was, it has made people think about their mortality and the possibility of losing those they love. So many things are beyond our control, but we can deal with some practical issues like life insurance, advance care directives, wills, and maybe even burial wishes, but we can also address it emotionally. Being aware of death can be a reminder that we must live life fully, express our love, and never postpone the important stuff.

I see death as an incredible mystery of life. Like childbirth, when we have family around anxiously awaiting the news of our arrival, in death we should have family around marking this life event - part of the journey.

Closing Reading:

Mark Nepo

Nothing escapes nature’s cycle. Not plants, horses, trees, birds, or human beings. Not the life of the mind. Not the life of the heart. Not the life of the spirit. All living things emerge, gather, spark new life, fall apart, die, and emerge in new ways. Each soul is a gust of God’s breath unfolding in the great energy that surrounds us like an ever-moving stream. The goal is not to cheat death, but to live in the stream with humility and aliveness that only an acceptance of death can release.