Joan Furman, MSN, RN, AHN-BC, CET III Presented to Nashville Psychotherapy Institute January 9, 2009
Flow
Be, as water is, without friction. Flow around the edges of those within your path. Surround within your ever-moving depths those who come to rest there— enfold them, while never for a moment holding on. Accept whatever distance others are moved within your flow. Be with them gently as far as they allow your strength to take them, and fill with your own being the remaining space when they are left behind. When dropping down life's rapids, froth and bubble into fragments if you must, knowing that the one of you now many will just as many times be one again. And when you've gone as far as you can go, quietly await your next beginning. © Noel Frederick McInnis
The names and illnesses of clients and sometimes their sex are changed in the case studies I will present. Unless otherwise specified, much of the material in this presentation is derived from my book, The Dying Time: Practical Wisdom for the Dying and Their Caregivers. (Crown, 1997).
Why on earth anyone would spend so much time on death and dying? As a young adult, I chose nursing as a profession and was exposed to dying and death before I turned 20. During undergraduate school, I lost many friends in Vietnam, around one a month. At 22, I had my own near death experience where I realized I had witnessed my own resuscitation from above the bed, and I had the ability to observe, sense, perceive, to evaluate the techniques being used and experience other thoughts and feelings while not inhabiting my body. This is described in The Dying Time in detail. I never shared that experience for 15 years after it happened until people started describing near death experiences in the literature. I had assumed it was some sort of aberration or hypoxic hallucination. And finally, my childhood sweetheart’s plane crashed in Vietnam the night before he was to come home. Without all of these experiences, I learned about death and grief at profound levels and came to wonder how most people learn about death?
Socrates said:
“Death is one of two things... Either it is annihilation, and the dead have no consciousness of anything; or, as we are told, it is really a change: a migration of the soul from one place to another.”
He also said:
“To fear death is nothing other than to think oneself wise when one is not. For it is to think one knows what one does not know. No one knows whether death may not even turn out to be the greatest blessings of human beings. And yet people fear it as if they knew for certain it is the greatest evil.” And Jules Renard said similarly: “We are ignorant of the Beyond because this ignorance is the condition of our own life. Just as ice cannot know fire except by melting and vanishing.”
From my experiences, I learned early the survival of consciousness, the impermanence of all things including life and the depths of grief. All of this happened before I was 25.
I felt a commitment to life’s transitions as a nurse practitioner in newborn intensive care and later the AIDS epidemic. I have attended about 2000 births and have provided care at about 1100 deaths. I wrote my book because I wanted to make dying less frightening, mysterious, and out of control, and more peaceful, loving and safe for everyone in my care. At one time my practice was about 80-90% clients with life threatening illness, dying and bereavement. Today those folks comprise only about 5%.
The theme of this whole year’s topics has been “Healing Separation and Restoring Union: Within Individuals, Between Individuals and Between Individuals and That Which Sustains Them Spiritually.” Congratulations to our co chairs for this theme. Obviously this speaks dearly to me. But what does healing and restoring union have to do with dying? The word healing comes from the Anglo Saxon “haelen”, meaning to make whole. It has nothing to do with curing. Healing can and does occur through the final breath of life and possibly beyond.
I am reminded of a client I’ll call Mark who, raised in a conservative family was dying as a gay man. His mother was distraught over her fear of his last breath being followed by burning in hell for his sexual orientation. She loved her son very much and although he knew her fears, she kept a quiet anxiety about them at his deathbed. As he was approaching his final breath, he turned purposefully toward her, smiled and looked directly into her eyes. Until his breathing stopped, he smiled. She said, “Oh honey, I can see it. You’re just fine. Thank you for letting me know.”
Healing can and does occur for the survivors even after the loss.
Today I’m going to talk with you about four things:
When Illness Takes Over: Deciding about Curing or Healing when it’s the end of the journey.
Helping your clients find meaning and purpose in life:
Helping Clients Finish unfinished business
Helping Clients Find Meaning in Death
When the dying time begins, the question you can help clients explore is regarding the goal:
When Illness Takes Over: Deciding about Curing or Healing
Medical care of people with life-threatening illness can have two goals: curing and recovery, or comfort and spiritual and emotional healing. Continued life is the goal of the first, and graceful and meaningful death the goal of the second. If there is to be any dignity and meaning in the death, then a shift to the second goal will become appropriate at some point.
While most people indicate that they wouldn’t want to end their lives on a respirator, it must be borne in mind that this journey is never a leap from perfect health to the hospital bed. There will be a thousand perfectly rational and logical decisions between the two. Before your terminally ill client gets on the road that leads to the intensive care unit, you can help prepare him or her to explore the map with the physicians and nurses. Ask where the proposed treatment will lead, and not to be satisfied with evasions or “Let’s wait and see.” As humans, we are inclined to believe that one more treatment, a few more days, will allow us to turn the corner. Just where the road will lead once past the corner is frequently unclear. Knowing the desired destination can make the journey much easier, and you can help your client find the right route. This only really works if you don’t see death as a failure or more politely put: giving up.
Most of the modern treatments that turn into nightmares for the dying are perfectly appropriate when the patient is expected to recover. The use of a respirator to get a person through open-heart surgery, or past the trauma of an auto accident, is entirely justified. The use of intravenous feeding to rest the digestive system during infection is completely appropriate. What may NOT be appropriate is using these same treatments or painful and invasive diagnostic tests when your client is clearly dying of a disease the physicians know they cannot cure. For example, pneumonia has long been known as the “old man’s friend.” It is a complication that can usher us quickly and relatively easily toward our death when a terminal illness or very advanced age is present. It can be treated with antibiotics, and occasionally with a respirator, and your client can survive the episode and then later die of another complication, which may be more painful or distressing. Even intravenous fluids are now considered unhelpful in the final few days of life when the body naturally and painlessly dehydrates from lack of interest in fluids, and in fact, this state, called “terminal dehydration”, assists the dying by providing chemical changes that reduce pain and anxiety. So you can see it is so important to explore your own feelings about death and your own desire to pursue staying alive more than living, as Patrick Swayze told Barbara Walters the other night in his interview about his cancer diagnosis. If you believe that keeping up the fight at all cost is the right thing to do, you may inadvertently convey that to the client or family.
One client, I’ll call Mary was worn out from chemotherapy, radiation, more chemotherapy and then a bone marrow transplant. Through a discussion of this topic, Mary decided that after the living hell of 6 torturous weeks in isolation, in intractable pain, that if she suffered another complication that could be “treated” that she would decide to let nature take its course. In this case, the family was on board. That’s not necessarily true for others. (Often we see the son riding in on a white horse from Seattle who aims to save Mom when Mom and the rest of the family have reached a peaceful place of letting go. That is often why unnecessary artificial continuation of life happens because that son may be the one who brings a lawsuit.) Mary developed a rapidly progressive metastasis to her lungs that resulted in acute respiratory distress, but she had planned with her physician to administer enough morphine that she would not be afraid of the sensation of air hunger. We gathered her husband and high school age children into her hospital bed and they lay with her as she quietly took her last breath, having told them of her love and smiling the whole way. I will never forget the beauty of that moment. I was filled with the same awe and touched as deeply as any birth I had ever attended. It was as though she had given birth to her children and they and her husband were helping her give birth to her now formless self. As in most experiences of this kind, when the life force left her body, everyone became distracted. Often gatherers at the bedside stare at cardiac monitors or the rise and fall of the chest and then seemingly get distracted or lose focus when the life force departs. So much of the wonder of death defies words or even conscious or logical thought.
Steven Levine in his book Unattended Sorrow (Holtzbrinck Publishers, 2005) and Carol Orsborn’s Speak the Language of Healing (Conari Press, 1999) refer to life threatening illness as an initiation. Illness creates panic and a loss of control. In the midst of strangling fear, people can learn to love themselves, to redefine themselves. Life threatening illness brings to the surface what may have lingered there for decades and the client may have to “confront themselves and choose between self-mercy and self-doubt.” (Levine p. 203). As Zen masters ask “What was your face before your were born?” we may all have to ask: Who am I if I’m not a therapist, if I lost a child and am no longer a parent; if a spouse dies and I am no longer a husband or wife; if I used to be strong physically and now all my strength is needed for activities of self care even on a good day; if I was an avid reader and my illness takes away my sight? If I have diabetes and my musical fingers have to be amputated.
Terminal illness creates crisis at physical emotional and spiritual dimensions unlike most anything else we ever face. It even raises questions of our own identity.
Helping your clients find meaning and purpose in life
Life review is a gift you can give your clients. Without fanfare, you can begin to ask questions that address finding meaning in the life that will be shortened.
Ancient Egyptians believed that upon death they would be asked two questions and their answers would determine whether they could continue their journey in the afterlife. The first question was, "Did you bring joy?" The second was, "Did you find joy?"
The great Buddhist teacher and author of The Tibetan Book of Living and Dying, Sogyal Rinpoche said:
Normally we do not like to think about death. We would rather think about life. Why reflect on death? When you start preparing for death you soon realize that you must look into your life now... and come to face the truth of your self. Death is like a mirror in which the true meaning of life is reflected.
A couple of years ago, I worked with Michael, a man who was dying of lung cancer after years of smoking and living hard. He had worked through his guilt about his addiction to nicotine being the probable cause of his death, but he had not yet made peace with his life, which had been full of parties and travel and over-exercising his ample talent as a wine connoisseur. He had only a fleeting relationship with depth and was doing some last minute searching for meaning in his life before it was over. I shared with him the Leonardo daVinci quote: As a well spent day brings happy sleep, so life well used brings happy death, and asked him what he thought. With big tears in his eyes, he said that was all he needed; that he knew for sure he had used up his life well. Michael died a content man.
I can’t say it is always that simple.
Stan, who had been born with multiple deformities and had undergone a lifetime of painful surgeries, was caring for his beautiful younger sister who was dying of AIDS. Maggie had never been accepted by her family because of her various lifestyle choices and compulsions and their particular religious beliefs. She was bed-ridden and Stan was trying his best to provide for her physical care. Stan usually acted very efficiently, a bit cold, and although he never said anything negative, had an angry edge to his voice. Maggie was too sick to do much more than receive care. She talked with me about how difficult his quiet hostility was, but couldn’t see any choice but to tolerate it.
One day in his exhaustion, Stan blurted out, “At least you could have taken care of me. I didn’t ask for what’s wrong with my body.” With his own shortened life expectancy, Stan apparently had counted on Maggie’s being there to help him when he might need her later. In fact, the whole family had planned for Maggie to be her brother’s caregiver when his dying time came. While Maggie might have been devastated by this remark, she felt a peculiar relief that finally Stan had said what she knew he and the rest of the family were thinking. They fought and argued and cried, fought some more, and finally came to a peaceful resolution with each other, their love winning out over their antagonism for each other’s values. Stan later told me that he had not stopped blaming her for her illness, but he decided to stop punishing her for it. Acceptance of Maggie’s value and dignity as a human being would have been the next healthy step, but this was as far as this family could go in healing.
Helping Clients finish unfinished business
Richard was a twenty-nine-year-old man I cared for for several years with a chronic debilitating illness. He felt sick all the time and struggled to keep working because he loved what he did. In September of that year, after another hospitalization and fifth brush with death, he was in my office discussing how many more life-threatening situations he might survive. He knew and accepted that he was going to die of his disease, but wondered why he hadn’t so far and when it would eventually happen.
I asked him, “What do you want?”
He answered, “I want to be thirty.”
I got up from my chair under the rather silly pretense of looking up his birthday on his chart and took some deep breaths to keep from sobbing in front of him; and then I said, “Well, Richard, your thirtieth birthday seems to be coming up on November 29th. I think you can be thirty if that is what you want.”
Richard entered the hospital with another infection on November 26th. He was very quiet and withdrawn, in fact, disinterested in people and events going on around him. I left town for the Thanksgiving holiday, aware that his birthday would occur over the weekend. I arrived back in town on November 30th, the day after his birthday, to find that Richard had just died quietly, surrounded by his family and friends.
I have also known the dying to wait until after a favorite holiday or anticipated trip. Or they may die before the winter holiday season if it was historically a depressing time for them. Men often die before a birthday, and women after. One elderly and very ill client defied all predictions of his truly imminent death when he found out his first grandchild was due in eight months. He lived long enough to hold his granddaughter and even to see her smile.
But sometimes unfinished business is more challenging to negotiate as a therapist. Not much is uglier than unfinished business and bitterness in the family during the dying time. First of all, you can help families not say all the wrong things. Here’s a list I’ve heard, literally:
Don’t cry. You’ll make yourself sick.
See it as a challenge.
Cheer up. It’s not the end of the world. (I heard that one from a doctor to the mother of a dying 30 year old).
Time heals everything.
I know what you’re feeling.
It’s God’s will.
She’ll be better off dead.
You shouldn’t feel that way.
Be positive. Be brave. Be strong...[be anything so I will feel better]
You should have seen the way poor Anne died. This is nothing.
The dying time creates opportunity to heal unfinished business, but it also creates more unfinished business because of the suffering the family endures. Family caregivers suffer enormously and their healing can also be a challenge.
My co-author of The Dying Time, David McNabb was caring for his partner who was dying of AIDS and this is a quote from our book:
“David: Danny and I had been together for 17 years and had known for many years that we were HIV positive. When he started to get really sick, it didn’t come as a surprise for either of us.
For a period of about six months, his anger got the better of him, and he took it out on me as the most convenient target. On top of all my increased responsibilities around the house and his care, it seemed impossible to please him. Formerly, he was one of the sweetest, most emotionally stable people I knew. Although we had never talked about our loss of each other, now we found it impossible to get through the day without at least one shouting match.
This was finally resolved a few months before he died. Friends had told him that he was being too hard on me, and then one day, it just became too much. I took down the suitcase and I said, “That’s it. I’m leaving. I can’t take this any more!”
I started to throw things in the suitcase, right there in front of him. Then I became so overcome with emotion I just ran out of the room, went into the living room, and collapsed on the sofa in tears.
In a few minutes, he shuffled into the living room, and came over and cradled me on his lap. He stroked my hair and said, “Everything is going to be all right. I’m so sorry I hurt you.” I said, “Danny, nothing is ever going to be all right again.” After a while, I calmed down, and then helped him back to bed. He never yelled at me again.”
Four years later, I took care of David throughout his dying time and experienced his outbursts. This demanding anger on the part of the dying person is a very common experience and we can help caregivers by giving them permission to set limits on their tolerance. Caregivers need support to help them normalize their experience, to stay connected to the dying person and to stay connected to themselves, a daunting challenge when they alternate between the emotions David expressed and the secret desire to have it all over with, even fantasies of hastening death.
We can teach healthy self-care and give permission to ask for help and take breaks. I encourage regular breaks early on because the dying often demand 100% care by one person and having other people come in regularly establishes a pattern that can make it more acceptable. We can encourage a good support system, time to meditate and reflect, keep a journal, watch a funny movie, take walks outside, maintain some normal interests, and eat healthy foods, engage in a regular spiritual practice and find ways to be touched, such as a massage, especially if the dying person was their primary source of touch. Many caregivers become ill, overweight and emotionally and spiritually separated from themselves and we can help so much by just giving permission to remember to stay connected to the self.
And lastly about finishing business, help the dying and their families accomplish what I call “The Big Five”: I am sorry; I forgive you for; thank you for; I love you (if it’s true) and goodbye. That is not as easy as it sounds because people usually fear that such final talk is premature, even when death is imminent. The bitterest tears shed after death are for words left unsaid. We can help with that even if the opportunity is lost before the death, by asking survivors to write these Big Five, or ask them to speak it to a prop such as a piece of fabric or stuffed animal or index card or empty chair in your office. This omits the healing that could have occurred for the dying person, however. They may have wanted to say the Big Five too and just needed it facilitated. We can do that.
Helping Clients Find Meaning in Death
Death is a great teacher and provides opportunities for healing and connection. Like birth, it takes its time, it’s often slow and it’s big and sometimes it’s messy and painful. As a therapist, you may find yourself at the deathbed of a client. As you all know, hearing is present even to those in coma, so I encourage family to continue talking to and around the dying as though they are listening. Touch is also important and you can encourage families to put a hand on the patient’s hand or a foot or on the heart or crown. Giving permission to touch the person whose life is ending is a gift you can give to the family as a therapist. Attending the death is a gift you can give yourself. It will change you.
Angie, a ten-year-old girl who was dying from complications of a disease called scleroderma, loved it when I used the touch therapies with her, particularly Reiki. In the hospital during the evening of her death, she was restless and fearful. She was aware that the end of her life was near and was worried about whether she had been good enough to go to heaven. I had been keeping my hands in place and encouraging her parents to do the same, and talking with her about safety and peace.
During one of the interruptions, when we had to step back to allow a nurse to do a procedure, even though Angie had hardly spoken at all that day, she opened her eyes and said, “Don’t stop. That feels good. It feels like the angels are here.” We held our touch to her until she smiled, looked up at the ceiling and took her last breath.
This smiling and looking up is a phenomenon I’ve witnessed hundreds of times in the last moments of life. Each of us may have a spiritual orientation that helps us interpret events like that.
Rumi said, “Die happily and look forward to taking up a new and better form. Like the sun, only when you set in the west can you rise in the east.”
White Eagle, a Native American said, "You live on earth only for a few short years which you call an incarnation, and then you leave your body as an outworn dress and go for refreshment to your true home in the spirit." The Christian tradition might interpret Angie’s and others’ smiling as they leave as seeing God or the gates of heaven. Many of my clients of varying faiths and no faith have told me they see a light. Even my 17-year-old cat Gigi stared peacefully at the corner of the ceiling while she was being euthanized.
Mary Oliver said in her poem “When Death Comes”:
“When death comes like the hungry bear in autumn; when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut; when death comes like the measles-pox;
when death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering: what is it going to be like, that cottage of darkness?
And therefore I look upon everything as a brotherhood and a sisterhood, and I look upon time as no more than an idea, and I consider eternity as another possibility, and I think of each life as a flower, as common as a field daisy, and as singular,
and each name a comfortable music in the mouth tending as all music does, toward silence,
and each body a lion of courage, and something precious to the earth.
When it's over, I want to say: all my life I was a bride married to amazement. I was the bridegroom, taking the world into my arms.
When it is over, I don't want to wonder if I have made of my life something particular, and real. I don't want to find myself sighing and frightened, or full of argument.
I don't want to end up simply having visited this world.”
Libba Gray, a dancer and actress who was dying of breast cancer, wrote a few weeks before her death:
“When I die I will dance just above the horizon with everything patched and mended where nothing hurts anymore and breasts and legs break through clouds to the beat of thunder and the shine of lightning where blue jays wing pirouettes with sparrows and rainbows ring my wrists and head and dolphins will rise up leaping and somersaulting all around me ocean waves will clap wildly while I bow and the mountains bow and I blow kisses to the earth and give God permission to draw the curtain all the time shouting -- "it was good Lord it was good."
Libba Moore Gray
Ultimately we fear death because we fear being forgotten. In Jewish tradition, you live as long as someone remembers you. We can help clients and their families create lasting memories through journaling, shooting video, writing letters to present and future family members, and actively creating a meaningful memorial service. Countless songs have been written about this concept of being remembered, seeing beyond form, such as this one of Josh Groban’s.
Remember Me performed by Josh Groban lyrics by James Horner and Cynthia Weil
Remember I will still be here As long as you hold me In your memory Remember When your dreams have ended Time can be transcended Just remember me I am the one star that keeps burning so brightly It is the last light to fade into the rising sun I’m with you whenever you tell my story For I am all I’ve done Remember I will still be here As long as you hold me In your memory, remember me I am that warm voice in the cold wind that whispers And if you listen you’ll hear me call across the sky As long as I still can reach out and touch you Then I will never die Remember I’ll never leave you If you will only Remember me (Remember me) Remember I will still be here As long as you hold me In your memory
I’d like to close with some concluding words from The Dying Time that ironically have been quoted all over the internet in the literature of each of the world’s great religions. I guess I didn’t offend anybody with this part:
The circle of life is eternal. It begins where it ends and ends where it begins; birthing and birth, growing and life, dying and death, birthing into new expanded awareness, new lives replacing those departed. Every day, in all life forms, as one leaves, another is born; as one phase of life passes, life surpasses itself. Death closes and thus completes the raw beauty of the circle as we are capable of seeing it while we are still alive.
However, in the midst of the tragedy of losing your own life or the life of one you love, it may be hard to conceive of a circle, of anything continuing or continuous. Your loss is too close, too tragic perhaps, to even comprehend the circle of life. It may simply feel like a horrible and useless tragedy, or you may consider it as tragedy in the epic sense.
The word tragedy conjures images and feelings for all of us. If we look at Shakespeare, we see parallels to the real life drama of the dying time. In these epic tragedies, there are three consistent characteristics. First are the noble characters whose lives cause them to be raised above the common concerns and normal life. In facing your death or in being a caregiver, you encounter and handle challenges far beyond what you believe yourself capable of, far beyond common concerns. Second, there is a tragic flaw that overcomes the hero and kills him; the hero always dies. For you this manifests not as a flaw of character, but of the physical body, causing imminent death. This physical flaw that cannot be overcome must be faced and accepted, and ultimately all must surrender to it.
The third characteristic of tragedy is the catharsis which arises from the realization that the world is a better place for the hero having been here. The way in which you face death leaves your special mark on the world. It empowers others to learn and grow. It engenders closeness and intimacy within the circle of family, friends, and supporters by allowing them to participate in the dying. The caregiver, too, helps a loved one who is dying in many ways that make her world better by allowing her to be in charge of her living and dying.
Each divine creation is both noble and beautiful and therefore the subject of tragedy when life is lost. In true tragedy, everyone experiences the full range of genuine caring to alleviate suffering, and expresses a life-changing emotional commitment to the one who is dying.
I would like to close the circle with the words of Goethe: “Every moment Nature starts on the longest journey, and every moment she reaches her goal.” The dying time is a time of living and learning and reaching for new goals. As you choreograph your final act or help the one you love, who is dying, I hope that you hold on to the light that you experience and that you emerge as the life that surpasses itself.
References
Furman, Joan and McNabb, David. The Dying Time: Practical Wisdom for the Dying and Their Caregivers. (Crown, 1997).
Levine, Steven. Unattended Sorrow (Holtzbrinck Publishers, 2005)
Orsborn, Carol, Kuner, Susan, Quigley, Linda, and Stroup, Karen. Speak the Language of Healing (Conari Press, 1999)
Sogyal Rinpoche, The Tibetan Book of Living and Dying. San Francisco: Harper San Francisco, 2000.