Guest post: The choice for compassion- a very personal view by Tom Leach

Posted by on 11.25.09 | 11 Comments
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Some of you may remember a post I made in May of this past year called Douglas firs were our Sanctuary. It was about a remarkable conversation with a friend who was terminally ill and choosing to hasten her death in accordance with the Oregon Death with Dignity Act of 1997. What I didn’t put in that first post, although I had permission to tell the story, was that the ‘T’ in the story is my ex-husband and dear friend, Tom. The ‘A’ in it is his beloved Abbie. In the following post, Tom tells his first person account of Abbie’s last day. This is not a political statement, but rather a very personal pilgrimage through some of the most difficult waters any of us ever tread. Tom presented his story at the recent Compassion and Choices of Oregon Annual Meeting in Portland at the end of October and it was warmly received. The story is a powerful testament. If it moves you, please feel free to leave a comment so that Tom can hear directly from you. –Beth, VTH Host

May 15, 2009 dawned bright and clear, making it two such days in a row. Perhaps elusive Spring, delayed behind weeks of rain and cold, was finally here.

As was our usual routine, I awakened my partner, Abbie. She could only sleep on one side, because any other position was too painful. Lying on her side allowed her first sights of the day to be those of the sun on her flower beds and of the sparkle of goldfinches and hummingbirds at their feeders. Her eyes were clear and bright, and her ever-ready smile competed with the sunlight for brilliance.

As we began the morning ritual of emptying the catheter bag and starting pain medications, we talked about the decision she had made the day before to hasten her death in the manner allowed by Oregon’s Death with Dignity Law. We had discussed this possibility many times and in great depth since the day we learned she had a life-threatening disease. Abbie knew I was entirely supportive of whatever way she chose to live or end her life. Prior to my retirement, I was a hospice chaplain. In that capacity, I had been present for the end of many lives. I had also cared for both of my parents through their dying processes. Abbie trusted that, if she chose to allow the disease to run its full course, I could go the distance with her as her caregiver. She also knew I would support her completely if she decided to choose the time and place to end the life that cancer was already taking from her.

Abbie was diagnosed 2 ½ years earlier with a rare form of soft-tissue sarcoma only recently given its own designation as Perivascular Epithelioid Sarcoma. The initial prognosis was for the cancer to take her life within 2 years. The oncologists we consulted knew of no specific curative treatments nor clinical trials for this cancer. They recommended treating individual metastatic tumors with surgical excision or radiation, if possible. Chemotherapy was available only as an experimental treatment. We quickly rejected that because the probable side-effects of the treatments far overshadowed the slim possibility of therapeutic success. After the diagnosis, one of our biggest challenges was to investigate alternative cancer treatment ideas that poured in from concerned friends and family.

Whether alternative or conventional, treatment options had two things in common: they could offer no verifiable assurances of extending her life, and while in progress they would certainly degrade her present quality of life. The quantity-of life versus quality-of-life dilemma faced by those with life-threatening illnesses did not elude Abbie. Were the odds of a favorable outcome worth the inevitable sickness during treatment? Was the dedication of resources demanded by treatments directed toward extending her life by an unknown quantity worth the sacrifice of what made that life enjoyable? Rather than pursue questionable curative treatments, Abbie chose to dedicate her emotional, physical, temporal, and financial resources to living out her remaining days as fully as her illness would permit.

And live fully she did. She used her time left here to deepen relationships with family and friends, to travel, to advance her professional knowledge of veterinary medicine and acupuncture, to improve her equestrian skills, to reflect on her life, and to address the tasks of life’s closure. As recently as three months before she died, she was in training with her eventing horse here in Oregon and taking polo lessons in Mexico. Until late February, she was able to maintain a fairly active lifestyle by managing her pain with oral analgesics.

In March, she received palliative radiation treatment to reduce the tumor on her lower spine. The treatment did not have any noticeable impact on her escalating pain. Because of the need for complicated pain management and because she was generating blood clots in her legs that travelled to her lungs, her oncologist felt referral to hospice was indicated. Then, at Abbie’s request, he began steps required by the Oregon Death with Dignity law to write the prescription for the medication she could use to hasten her death if she chose to do so.

For almost two months, home care hospice had been doing a good job of caring for Abbie. She had recently reached the maximum dosage of oral, transdermal, and topical medications needed to manage the escalating pain from tumors growing in her bones and spine. The next step for pain relief would require infusion procedures. She had recently lost the use of both legs. Her bowels were blocked by the narcotics, and she had a painful urinary tract infection from the catheter. We had been warned that the growing tumors affecting her central nervous system could suddenly cause a dramatic deterioration in her condition. On the other hand, because she was a very fit 58 year-old with a strong heart and lungs, she could possibly live weeks longer while her pain increased and her body deteriorated.

In her career as a veterinarian, Abbie had euthanized many animals when treatment options would serve only to extend an animal’s life without maintaining an acceptable quality of life. Most people describe euthanizing a suffering animal as the “humane” thing to do. Abbie often commented on the irony of our recoiling from similar compassionate treatment for a suffering, incurable human animal. In her experience, the animal and its human partner often arrived at a shared decision when it was time to end the suffering. Although she clearly did not believe that animals and humans should be considered equals, she did feel it was appropriate to include a similar “humane” rationale when considering her own end of life options.

She knew her illness was irrevocable and terminal, and she was experiencing the limitations of palliative comfort care treatments available. The Oregon Death with Dignity Act requires that patients be able to lift and drink from a glass, but Abbie knew that her disease could cause her to suddenly lose this ability. The window opened by the passage of the law could close with no warning and the option for self-determination would be gone. The quality of her life had deteriorated to the point where she had no interest in extending its quantity. But was this a shared decision with those who would be most deeply impacted by it?

Although she had my blessings and those of her closest friends, she had only been able to discuss this option briefly with her two adult children whom she deeply loved and respected. She would not make an end-of-life choice without first considering their feelings and wishes. During tender and loving discussions with her children the previous day, they assured her they supported her choice and wanted to be with her if she chose to hasten her death. With this final blessing, Abbie peacefully resolved to take the medication.

On that bright and clear morning as we carried her to the wheelchair, she affirmed, “Today is the day. I have nothing to gain by putting it off and only more pain and loss of independence to look forward to.” She expressed regret that there were some people she had not been able to say goodbye to, but she knew her energy was failing too quickly to accomplish that task. We took care of some business matters in the morning and by afternoon she was in her favorite lawn chair. There, surrounded by her beloved pets, she watched the birds at the feeders and reminisced with her children and with me. Her acupuncturist arrived to give a treatment designed to help ease the transition.

Beginning with Abbie’s admission to hospice care, I had several conversations with the staff and volunteers at Compassion & Choices of Oregon (CCO) about the process of hastened death. They gave sound and helpful advice about where to fill the prescription and how to prepare and consume the Seconal solution. The local volunteer team contacted me and offered to come to our home to assist us with the final preparations. I declined the team visit but did call George Eighmey, the director of CCO, for some last-minute advice and counsel. He gently assured me that, out of over 400 people who had elected this option since the second passage of the law in 1997, only one had failed to achieve the desired result and, in that situation, there had been unusual extenuating circumstances.

While I watched Abbie visiting with her children and receiving her acupuncture treatment, I opened the 100 Seconal capsules and dissolved the powder into 5 oz. of water. It was a surreal experience. I was preparing a potion that would contribute to ending the life of the person I loved most in the world, the person I most wanted to live. At the same time, I knew I was helping end the suffering of the person I least wanted to suffer. I was at once grief stricken and resolved to complete my ‘humane’ task. In the midst of my own emotional turmoil, I still knew I was doing the most loving and compassionate thing I could possibly do for her given these circumstances. Abbie’s earlier words to me gave me strength to continue: “Just remember, Tom, it is the cancer that is killing me. You are only helping me choose the time and place.”

When the acupuncture treatment was finished, Abbie decided the time had come. With two dear friends standing watch at the gate, and with her daughter’s head on her shoulder and her son holding her hand, Abbie drank the bitter liquid I handed her. She immediately quipped with her typical sense of humor, “They sure won’t be making a new toothpaste flavor out of that.” She then drank a short chaser of Compari and soda to help clear the bad taste and to accelerate the effects of the barbiturate. She smiled and turned to each of us to tell us how much she loved us and how grateful she was to have had us in her life. Through tears of love and sorrow, we responded in kind. She then leaned her head over on her daughter’s head and peacefully went to sleep. Within ten minutes, respirations and heartbeats stopped. Abbie’s life ended with the same grace and dignity with which she had lived it.

Since my last day with Abbie, I have had many opportunities to reflect on our choices that led to her decision to hasten her death as allowed by the Oregon Death with Dignity Act. Although I miss her terribly and would have gladly cared for her as long as she wanted, I have no regrets about the path we chose. I am comforted in my grief by knowing that Abbie did not have to suffer through an even more painful and protracted dying process. For this, I will be forever grateful to the compassionate people of Oregon for passing into law the most humane end-of-life option in our nation. And I will be forever grateful to the wonderful staff and volunteers of Compassion and Choices of Oregon who helped shine a light on a dark path not often taken.

A final note: If a terminally-ill person meets the criteria for receiving the lethal prescription from a physician in Oregon, he or she also meets the criteria for admission to hospice. I strongly recommend that hospice care be tried before any decision to hasten one’s death is made.

Tom Leach

Philomath, Oregon

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