When choosing death is an affirmation of life: A public remembrance of our family’s journey

As we write, it is mid-winter, four months after the death, at age 80, of Nedra Faye Hathaway, Karen’s mom and Jim’s mother-in-law. Nedra chose to end her life on October 24, 2016, over a year after being diagnosed with pancreatic cancer, almost eleven months after major surgery to remove her pancreas, and four months after learning the cancer was still present even after eighteen chemotherapy treatments.

It is accurate to say that while at peace with our mom’s decision to utilize California’s End of Life Option Act, it is also accurate to say that questions, regrets, and uncertainties remain. Among them are:

Could or should we have pressed her to delay taking this action?

Are there things we could or should have done with her that would have been meaningful to her? For instance, why did we not take her to see the Golden Gate Bridge one more time?

Did we leave important things unsaid?

Did we express clearly enough that she was not a burden to us?

In the paragraphs that follow, we intend to tell, in short form, our journey with Nedra during her last months of life, to reflect on what we learned, and to put into words some of the things that she wanted to have said.

In late 2014, Nedra first expressed her desire to sell her home in Oregon and move in with one of her adult children. We happily agreed to have her move in with us. In August of 2015 we flew to Portland, rented a U-Haul, loaded her most important belongings, and drove down I-5 to our home in the Oakland hills. We gave up our master bedroom so that she could set up a small apartment-like living space of her own. We shared a kitchen, living room, and a backyard looking over the San Francisco Bay that she grew to love. We like to think that the autumn of 2015 was a very happy period in her life. She joined our health club, where she did water aerobics. She joined our church, where she enjoyed Soup and Study and the Reading Group. She made friends with others with whom she went on outings. She watched CNN and was one of the first people in our circle of friends to predict the election of Donald J. Trump. This most certainly dampened her joy in the likely nomination of Hillary Clinton as the presidential candidate of the Democratic Party.

Prior to her move from Oregon, Nedra’s personal physician advised her to establish a relationship with a physician in Oakland as soon as possible in order to investigate some suspicious spots he had seen in a CAT-scan. Nedra took this advice to heart and soon underwent a battery of tests that revealed some “pre-cancerous” lesions on her pancreas. Her physicians recommended surgery to remove her pancreas and her spleen. Although this was an arduous surgery and would render her a diabetic, they were confident of a long-term positive outcome, in part because she was strong and in overall good health. Nedra researched both the physicians and the concept of having her pancreas removed, and then agreed to surgery.

On December 1, 2015 Nedra underwent a seven-hour surgery. Afterwards the surgeon told us he felt that the surgery, though long, had gone well. He noted that they found a mass, which later turned out to be cancerous, on the tail of her pancreas that had not shown up on any previous scan, but that they were able to remove it. The recovery from surgery was more difficult than we anticipated. Indeed, it was one of the most demanding times for her and for us. The main challenges were her need to gain strength, the fact that she was on a feeding tube that needed care and management, and the fact that she was a new diabetic. She wanted to go home, but we did not feel we could provide the care she needed. This was a source of some significant tension. Karen felt guilty for saying, “I don’t think I can provide the care.” Nedra felt inadequate for not being able to do more. We reached the decision that she needed to go to a skilled nursing facility to gain strength before she came home.

Although the nursing home provided an overall acceptable quality of care, it was dreary and isolating. Nedra did not feel well and she did not want to be there. After a few days it was necessary for her to return to the hospital, where she remained until shortly before Christmas. In retrospect, we believe the surgery, the two hospitalizations, and the time in the skilled nursing facility shaped Nedra’s decision-making in regard to end-of-life care. In no way did she want to go through, or put us through, a similar ordeal.

When she finally came home we were very fortunate that Karen’s brother, Jeff, a diabetic for more than thirty years, was able to come and spend a week with us. He helped to care for Nedra, keeping her spirits up and instructing us all on how to live with diabetes. His calm presence and depth of knowledge gave us a good start to the year 2016. Together we felt that “we can do this.”

After a few months of recovery, Nedra received advice from her oncologist on a course of chemotherapy using a drug that was reported to have minimal side effects. Once again, she did her research and made the decision to begin treatment. Her schedule was one treatment a week for three weeks and one week off for a total of 18 treatments. She handled the treatments pretty well. Indeed, she drove herself to the appointments for the first half of the regime. She returned to her water aerobics class; she cared for her great-grandsons (two of whom were born during this time frame), and she stayed abreast of all that was happening with the presidential primaries. Although she became increasingly fatigued and lost weight, she did not lose her hair and she maintained a very positive outlook. Notably, she became increasingly adept at managing her diabetes, monitoring both her medications and her diet. She was proud that at her age she was managing these physical challenges well.

Once the chemotherapy treatments were completed, Nedra’s oncologist scheduled her for a CAT scan. Karen went with her to get the results. The physician was very guarded in her diagnosis. She could not say for certain that the cancer had spread, but the scan indicated that something was there and that there was a high likelihood the cancer was now in her abdominal walls. To know for sure would require major surgery. She also stated that they could do another round of chemotherapy using a much stronger medicine. A third option was to wait and see if symptoms of cancer developed. We did not even come home and talk about it. Right there in the physician’s office she said, “No more surgeries, no more chemotherapy.” We tried to remain positive, but Karen remembers it was a long ride home.

For a few weeks things continued positively; Nedra, however, again began to lose weight and there were some periods of stomach pain. Nedra re-visited her physician to learn that the symptoms she was experiencing were indicative of the suspected cancer in her abdominal walls. This, of course, was very sad news. The conversation centered on what to expect and next steps. It was at this appointment that Nedra requested to be put in touch with the healthcare system’s End of Life Program.

For many years Nedra had been a proponent of the right to die with dignity. She had supported Oregon’s approval of “Death with Dignity” law. Different states refer to this as physician-assisted suicide, right to die, or euthanasia. A Facebook message to Karen from one of Nedra’s friends prior to her passing reads:

Your mother’s end of life decision does not surprise me. We talked many times about this, and the primary concern she expressed to me about moving to California was that at the time she moved it did not have Death with Dignity. She even thought about keeping her driver’s license in Oregon, perhaps using Brad’s (Karen’s oldest brother) address, so this option would be available to her if the time came that she wanted to exercise it.

The time had come when Nedra was clearly exercising her right under California’s new End of Life Option Act to determine the time, place, and method of her death. The End of Life Option Act stipulates that to receive an aid-in-dying drug a patient must be eighteen or older and a resident of California. The patient must also:

have a terminal disease—a physician must determine that the disease cannot be cured or reversed and is expected to result in death within six months;

have the capacity to make medical decisions;

not have impaired judgment due to a mental disorder (not all people with mental disorders have impaired judgment);

have the ability, physically and mentally, to take the drug at the time they want to take it.

Patients cannot request aid-in-dying in Advance Directives or other documents. Healthcare agents, surrogates, and conservators cannot request aid-in-dying for a patient, even if they know that is what the patient would have wanted. ¹

Knowing that she met all of the above criteria, and fearful of the day when she would not, Nedra, along with Karen and Jim, met with the End of Life Option Program representatives. At this meeting, the steps Nedra and her medical team needed to take were explained to us. The most salient points were:

The patient’s attending physician must decide that the patient’s illness is terminal, meaning that it cannot be cured or reversed and that the patient will likely die in six months or less.

The patient has the capacity to make medical decisions.

The patient must make two verbal requests, at least fifteen days apart, directly to his or her physician (the attending physician), as well as one request in writing. The written requests must be on a special form that is witnessed and signed by the patient. The patient must discuss this decision with his or her physician without anyone else present to make sure the decision is voluntary.

The patient must then see a second physician (a consulting physician), who can confirm the patient’s diagnosis, prognosis, and ability to make medical decisions.

The patient and the physician must meet to discuss the actual use of the end-of-life medication. At this meeting the patient is again asked if his or her decision is completely voluntary. ²

At this same appointment Nedra decided to enter hospice care with the understanding that when she was ready she would enter the End of Life Program.

An important form of family communication during this time was regular conference calls. Nedra, Karen, Jim and youngest son Ethan, and occasionally older son Aaron and his wife, Teresa and daughter, Kristen with husband David, would sit at our dining room table. Nedra’s sons, Brad and Jeff, and Brad’s wife, Susan, would join via phone. It was in our first conference call that Nedra, in reference to her decision to, at some point, take the end-of-life medication, encouraged us to express our feelings but made it clear we had no vote in her decision. Her exact words were, “This is not a democracy.”

Although somewhat overwhelming to consider, most of us were generally supportive of the path she was taking. If hesitance was expressed, it was about timing, not her right to do it. We wanted as much time with her as possible, while she was focused on not experiencing pain, not losing control, and “not wanting to be a burden.” It was the “I don’t want to be a burden” that evoked the most response from the family. We all tried to make it clear that she was in no way a burden to us, and that we were willing to rearrange our schedules to make the necessary adjustments to provide any care she required.

While she spoke of how much it had meant to her to care for her siblings as they died, it was clear that she did not want to put us through a similar experience. This remains a sore point in the early stages of our remembering. We ask ourselves if there was something more we could have done to convince her that she was not a burden, and that caring for her as she cared for her siblings would be meaningful to us.

Karen still wonders if her reticence for her mom to come home immediately after her surgery in December 2015 contributed to her mom’s outlook. Once again, a Facebook message from her friend is of comfort:

I can’t imagine how hard this must be on you, and can only say that being supportive of her feelings, like you and the family are doing, is probably the most loving thing you can do for your mom. It is human nature I guess to try to talk somebody out of ending their life, but that would only make things worse for your mother. She is one of the strongest women I have ever known, and leaving this earth on her own terms to her is a blessing.

Other topics of discussion in these conference calls included her finances, her car, plans for her memorial service, what to do with her ashes after she was cremated, and how she was feeling. Nedra’s approach was very matter-of-fact and methodical. “Nedra the Program Director” was very much in evidence. Also, during these calls her resolve was clear; she often said, “I am not afraid to die.”

As her health began to fail, a weekend visit from long-time friend Diane Brandsma and an extended visit from her sister, Shirley Woodring, were very heartening. Diane provided counsel and encouragement. Shirley provided the same, as well as providing care so that Karen could clear her desk at work. When Shirley first arrived, Nedra was tired and a little bit confused because of the amount of morphine she was taking. A hospice nurse noted and suggested a new pain medication, methadone. Nedra responded well and was able to enjoy her time with her sister as they went through family pictures and remembered stories from their childhood.

It was during Shirley’s visit that what Jim remembers as one of the most sobering moments of this journey, occurred: the delivery of the secobarbital, the actual end-of-life medication. The director of the End of Life Program and a pharmacist delivered it. As they went through the protocol for the administration of the drug with Nedra, Shirley, and him, Jim was overwhelmed to have possession of such a powerful force. He remembers thinking, “We have a small weapon of mass destruction in our home.” Further, there were two surprises with the delivery of the drug: it came in ninety small capsules that would need to be opened individually, and the cost to Nedra (not covered by insurance) was over $2,000.00. Although Nedra could afford this, the cost certainly raises questions about affordability for all.

Some preliminary life-expectancy goals, affirmed by Nedra’s hospice nurse, were to live to enjoy her eightieth birthday celebration on October 20th, the presidential election, and a Thanksgiving visit from Brad, Jeff, and their families. By early October we realized that living to Thanksgiving might be an overly optimistic goal. With that in mind, Brad and Jeff changed their travel plans to be here for the weekend following her birthday, which was on a Thursday. We had planned a birthday celebration to coincide with our family’s annual fall celebration of “Hoptoberfest;” it was looking to be a grand celebration of her life with over fifty friends and family in attendance.

October would prove to be both a full month, as well as Nedra’s final month. She was asked to speak to her healthcare provider’s End of Life Program gathering of all the leaders of this Program throughout Northern California. She readily agreed because it was so important to her to tell her story and advocate for the right to die with dignity. This was scheduled for her birthday, Thursday, October 20^th.

On Monday, October 17^th, Nedra sat at our dining room table, with Jim, and completed her ballot for the 2016 general election, local, state, and federal. She was conversant with many of the state and local issues and candidates, but it was most important to her to cast her ballot for a woman candidate for president, in this case, Hillary Rodham Clinton. Nedra, who once ran for public office herself, viewed voting as a civic responsibility and as a sacred right. Jim posted a picture of Nedra completing her ballot on his Facebook page, and wrote: “When one is in hospice care, to vote is a profound act of hope, to follow in the path of the prophet Jeremiah who bought a field in his homeland even when it was under siege.” Though Nedra likely knew she would not live to see the outcome of the election or the fulfillment of her commitments, she understood that by voting she was shaping the world her children, grandchildren, and great-grandchildren would inhabit.

On Wednesday, October 19^th, one day before her birthday and presentation to the End of Life Program leaders, two days before Brad, Jeff, and their families were to arrive and three days before the big party, Nedra, during dinner, informed Karen and Jim that she did not feel she was up to the party and that she felt the next day, her birthday, a good day to take the end-of-life medication. This meant that she would not participate in the End of Life Program panel and that Brad and Jeff would not get a chance to see her before she died. Karen and Jim remember being speechless. Finally, Jim said, “Nedra, we agreed to support you through this process; however, we cannot, in good conscience deprive Brad and Jeff of their right to see you and say good-bye.” Karen informed the End of Life Program coordinator that Nedra would probably not be in attendance the next day, and we all went to bed not speaking to each other.

Very early Thursday morning, Nedra rapped on Karen and Jim’s door and asked what time we needed to leave to get to the panel. To this day we do not know if she forgot what she said on Wednesday night, or she simply changed her mind. Nedra wowed the participants of the Program. She expressed her strong belief in her right to make end-of-life decisions, appreciation for programs such as the one in which she was participating, her desire to see more states adopt Death with Dignity legislation, and her personal gratitude to each of the professionals who volunteer to support patients who make choices like hers. She also said, “I recognize there is a difference in supporting me in this process and agreeing with me at every turn in the road.” Nothing else was said about taking her end-of-life medication, and a small birthday celebration was set for Saturday.

On Friday, October 21^st, Brad and Jeff and their families arrived. On Saturday morning, a warm and sunny fall day in the Bay Area, the family gathered on the back patio for breakfast. Nedra said she would like to have a family conversation. She needed to know who would like to be in attendance when she took her final medication. Karen and Jim affirmed that part of their commitment to her was to be there. Brad said the same. Jeff said he did not need to be there.

This led to consideration of setting a date. She was careful to avoid birthdays and other significant days and she was aware that travel and work schedules were complicated. Taking all this into account, together we decided on the coming Monday afternoon at 4:00 p.m.

That Saturday afternoon a small group of family and friends gathered to honor Nedra and celebrate her birthday. Although Nedra was tired, she enjoyed the homemade food, the words of appreciation, the stories of family, and some beautiful Hawaiian leis that were sent from a dear friend.

On Sunday morning, while Jim went to church, the rest of the family took a trip to Lake Merritt in downtown Oakland, where Karen and Brad’s two boys, Adam and Will, went sculling. It was a beautiful sunny day and Nedra enjoyed the time outdoors and being with her family. As the day progressed, knowing that many of the family had to catch flights home, she dedicated time to say individual goodbyes to grandsons, Ryan, Eric, Adam, and Will, and daughter-in-law Susan. Her conversation with Jeff included his real concern that she was doing this to send a message and acting too quickly. He left, however, respecting her view and supporting her decision.

Sunday evening, at a small family gathering, we ate Chinese food (one of her favorites) and we made plans for the day ahead. Topics of discussion included what she wanted as a “chaser” and what the secobarbital would be mixed with. The recommendation from the medical team was to mix the bitter powder with something that was very sweet. She asked that the medication be mixed with tapioca pudding and for a vodka and orange juice chaser. It was decided that Teresa and David would go to work in the morning and join us after lunch with the great-grandsons. Kristen and Aaron would be over in the morning. Aaron agreed to pick up chocolate éclairs as Nedra requested. Her friend, Diane Brandsma, said she would join us as well. It was strange to go to bed knowing what the next day would bring.

Early Monday morning Karen remembered that the cleaning ladies would be there at 8:00 a.m. and that during that time everyone needed to be out of the house. We agreed to meet at our health club, which has a lovely deck looking out over the Bay, one of Nedra’s favorite Bay Area locations. Aaron brought the pastries. Halfway through our breakfast Nedra asked if someone could take her to Nordstrom’s as she had Nordstrom’s Notes that only she could redeem. Karen agreed to take her, thinking that this is surreal. Everyone else stayed on the patio chuckling at Nedra’s resolve to leave nothing unfinished.

Nedra and Karen wandered around the Nordstrom rack, where Nedra finally decided on a tie for Jim. On the way home, Karen asked her what she would like for lunch as the protocol called for a meal about four hours before taking the secobarbital. Nedra said she enjoyed the Chinese food from the previous night and asked if any of that was left. Karen said there was not but that we could pick up some more and asked if she would like that. Nedra said she would.

After enjoying the Chinese food, the family gathered in the living room. Nedra played on the floor with her great-grandsons, pictures were taken, and stories were told. Karen remembers Kristen telling Nedra that she wanted to read more, and asking her for book recommendations. (Nedra recommended Uncle Tom’s Cabin.) Karen was physically sick making a trip to the restroom about every half hour. Jim, knowing he would have to prepare the secobarbital, told Karen he felt like an executioner. The clock ticked.

The protocol called for her to take two drugs an hour before she took the end-of-life medication. At 3:00 p.m., in something of a daze herself, Karen asked, “Mom, throughout this process you have been asked, ‘Are your actions voluntary?’ So, I need to ask you now, before we give you some preparatory medication, do you still want to go through with this at 4:00 p.m. today?” Without hesitation she said, “Yes.” At this time, Karen gave her the medication and Brad and Jim began the lengthy process of opening the ninety capsules of secobarbital. It took them forty-five minutes to complete the task. Mixed with the tapioca pudding it totaled about a half cup.

At 3:45 p.m. Karen asked Nedra if she would like to change into something more comfortable. Nedra said she would and she asked Kristen, a nurse, if she would help her. A few minutes later they returned, Nedra in her pajamas and bathrobe. Together we decided to gather in Nedra’s bedroom. She sat on the edge of the bed, with Karen on one side and Brad on the other. The three grandchildren stood arm in arm across from her. The rest of the family remained in the family room. Jim brought in the prepared medication. We said a prayer and there were hugs. Jim handed her the bowl. She took a spoonful and pronounced that it tasted awful. There was laughter. She then proceeded to eat it rapidly. Ethan ran and mixed the chaser and brought it to her. She took a sip and said, “Now that’s delicious!” She raised it in a toast and then finished it.

She said, “I feel pretty good.” Karen said, “You’re probably going to start feeling tired; let us know when you want to lay down.” Shortly thereafter she asked to lie down. Karen and Brad both gave her a hug. Karen remembers telling her she loved her and her mom saying the same. Nedra then closed her eyes.

Nedra had asked that someone hold her hand until she breathed her last breath. We honored that by taking turns sitting with her. About two and a half hours later her breathing ceased. Ethan was with her at the time. This was a very sad moment, but also a very peaceful moment. A call was made to the hospice, and the nurse came about a half hour later to pronounce Nedra’s death and to call the mortuary that would handle her cremation.

For all of us this was a deeply personal and most significant journey. While we began this essay with some lingering questions, there are enduring lessons and impressions as well. This is true on a personal level, a relational level, a legal level, a political level, and a theological level.

We asked family members for their personal reflections. Her sister Shirley answered, “What was clear to me was how important it was for Nedra to have some control when things were beyond the ability of doctors, medicine … and she did not want to spend the last days of her life suffering.”

Nedra’s son, Brad, said, “Like my siblings, I was confronted by the end of a parent’s life for the first time. It was helpful for me to read up on the matter and then to talk with others who I respect about this part of life, including Mom. I was struck by Mom’s thoughtful planning, her one-on-one conversations with various family members, and the sincere candor to my questions about how she weighed out the joys of being in the presence of family against the discomfort of her cancer’s assault. In that last 24 hours, there was the juxtaposition of seeing her walking out to see the stars and wondering if she might soon be ‘zipping about’ in the heavens; the irony of her flossing (as we laughed); the choice to get up off the floor with great-grandkids when it came time to get changed. Finally, the way she spooned the bowl clean of that terrible tasting life ending medication.”

Eldest grandson, Aaron, said, “I think Teresa and I both took from the experience the idea that this was a situation about maintaining control and command in the face of uncertainty and pain. Nana did not want that taken from her. It’s okay for life to be challenging and unfair but when faced with mortality and loss of autonomy there is now another option.”

Aaron’s wife Teresa said, “My strongest memory was when she was on the floor playing with the babies an hour before she died. That was a clear expression to me that she was not afraid to die. She demonstrated, as much as possible, that she was in control of the situation, that she was able to maintain her mental capacity without too much physical pain.”

Kristen, a granddaughter, spoke of a sense of completeness. She said, “It just seemed like this is the way things are supposed to end. You’re born, you live your life, and then you die.”

Grandson Ethan reflected, “I just remember her last day. We laughed, ate, shared memories, and she showed remarkable strength and determination to go out on her own terms. That’s the way I want it to be for me.”

On a relational level, we were brought together as a family in ways, and at a depth, that we had not experienced previously. The conference calls continue as needed. We shared a wonderful Thanksgiving and memorial service in Oregon in November. We still speak fondly of “Nana.” Also, the care of our community and our congregation for Nedra, and for us, as we walked this road will always be remembered with profound gratitude. Many were there for us in ways for which we can never adequately say “thank you.”

On a legal level, we find that, with Nedra, we support the adoption of “right-to-die” legislation by additional states. While we do not think that the choice she made will be the best choice for every person and every family, we recognize the comfort that simply having the right to choose the time and place of her death brought her, and we find ourselves hoping we will have the same right regardless of the state we live in.

We are heartened by the words of Kim Callinan, Chief Program Officer for Compassion & Choices, recorded in a Washington Times article on February 23, 2017: “We absolutely see a growing number of people and a growing number of states who are interested in seeing the passage of end-of-life options.” Simultaneously, we are concerned by the position of Supreme Court nominee, Judge Neil Gorsuch. In his 2006 book, The Future of Assisted Suicide and Euthanasia, referenced in the same Washington Times article, he argued that “Oregon’s physician-assisted suicide law makes a ‘legal discrimination based on physical health (the terminally ill versus everybody else)’ and ‘seems a candidate for heightened review.’”

Admittedly, there are significant legal questions remaining. Among them:

Why are persons suffering dementia, who do not have a diagnosis of six months or less to live, denied participation in the process outlined in the California law?

Is the cost of the medication an unfair barrier to participation?

What if people live in parts of the state in which there are no doctors who have agreed voluntarily to participate in the End of Life Option Act protocol or are part of a medical plan without such physicians?

On a political level, there is ongoing debate in our nation about Death with Dignity laws. While it is not the most prominent component of the “right to life” vs “pro-choice” controversy, the Death with Dignity debate falls within the parameters of this larger debate. Our journey with Nedra leads us to identify ourselves as both “pro-life” and “pro-choice.” We are “pro-life” in that we affirm the value of every moment we shared with her and find ourselves wishing there had been more. We are “pro-choice” in that we want to see the right to choose one’s own death extended to other states while it is protected in the states in which it currently exists. Nonetheless, we see the need for much better definition of what it means to be “pro-life” and “pro-choice.” To be “pro-life” must be more than being pro-existence, and to be “pro-choice” must be more than rejecting conservative positions as unfeeling.

On a theological level, several themes beyond the ongoing discussion as to whether human beings have the right to “play God” emerge. These themes are:

Stewardship: We found comfort in the understanding that human beings are stewards of all that God has given us, including the gift of life and the certainty of death. In his letter to the Romans (14:8), Paul asserts that “Whether we live or whether we die, we are the Lord’s.” Do his words not assure us that death, even a self-chosen death, does not negate our relationship with the Eternal One? As such, is it not fair to assert that choices about living and dying remain within our purview as stewards of the created order?

Promise: Again, we found solace in the perspective of Paul. In his first letter to the Corinthians (15:55), as he reflects on the promise and power of the resurrection he is moved to exult, “Where, O death, is your victory? Where, O death is your sting?” Here he does not deny the certainty of death but he calls into question its eternal hold on us. Certainly, words like these have something to say to those who wonder if to choose death is to make a faithless choice.

Courage: As we have noted, Nedra, on more than one occasion, stated that she was not afraid to die. Certainly, her own well demonstrated internal strength and fortitude was a source of this courage, but so likewise was the reality that since her teenage years she had been a part of a religious tradition that affirmed that the resurrection of Jesus from the dead had significance for the entire created order. She was no stranger to the Easter proclamation, “He is risen,” and her courageous end-of-life choices stand as witness to the way she internalized this proclamation.

A memory from Nedra’s longtime friend and colleague Diane Brandsma is witness to Nedra’s faith: “On the morning of her death, as we stood on a deck overlooking Oakland and the Bay, I asked Nedra three questions borrowed from a dear friend of mine regarding life, love and death. Her responses were:

On life: “It is varied, rich, colorful, both vibrant and serene.”

On love: “Love is warm and inviting … with ups and downs.”

On death: “I used to think it was dark and dreary. Now … it is unknown, curious, and like a welcoming home.”

We shared a draft of this essay with Nedra’s longtime friend, retired Judge Nancy Mead Campbell. She responded:

Dear Karen and Jim,

Thank you so much for writing and sharing this. I am writing this with tears in my eyes because I really miss your mother, but also with the knowledge that you really understood and honored your mother’s wishes.

I do want to share that in my last conversation with your mother a few days before her death, she did not mention being a burden as part of her decision. What she did tell me was that the pain was getting worse and sometimes really unbearable, though the methadone seemed to really help. The other concern she had was not wanting to live long enough to lose her ability to think clearly. None of us wants to be a burden, but I truly think foremost in your mom’s mind was wanting to leave this world with a good mind, and before she was in too much pain to enjoy life.

As you know, your mother placed a high priority on being in control. She was so blessed to be able to leave this world in control. And, to have her family supporting her decision was the best gift you could ever give her.

I would love to be able to share your essay with some people who have the ability to make a difference. Our hospital system prohibits its physicians from participating in Oregon’s Death with Dignity Act; the CEO physician of the two hospitals on the coast is supportive of Death with Dignity and I believe is willing to go to bat to get the hospital system to change its policy; I think your essay would help her when addressing this issue with the Samaritan system. I may want to go with her to argue for the policy to be reversed and sharing this essay with other executives in the system would be helpful. Please let me know if this is ok with you. I will not share your last names.

Love to all of you,

Nancy

Our family’s end-of-life journey with Nedra is not something we would relish repeating, for on that journey we experienced pain, uncertainty, and fear. Yet, neither is it something we would trade for anything, for on that journey we experienced courage, joy, wisdom, faith, inspiration, and love. Nancy’s letter reminds us that Nedra wanted to share her story honestly because she believed it could help bring change in human systems and human hearts.

End-of-life decisions touch almost every life. Thus, we hope that our story is one to which many households and individuals can relate. We do not expect that all will agree with the path we chose, but we hope that what we have to say will encourage families and friends to have “before the crisis comes” conversations. These conversations can help prepare us for own inevitable deaths; they can help prepare us to face difficult situations that are almost certain to arise, and we have learned that they connect us, in hopeful and loving ways, to our communities, to our families, and to ourselves.