Life-Limiting Illness/Advanced Aging

I'm afraid," Bob told me.  "I'm in my mid-eighty's.  I'm obviously not going to live forever, but no one has taught me how to die. Or, more importantly, how to live well now, while I'm still here. You've taken care of a whole lot of people as a hospice nurse. Don't you have some tips from them for someone like me?"

Bob's comment got me thinking. Decades of working as a hospice nurse has provided me with a repository of wisdom. It's not my own, at least mostly, but it might help.  If so, where to start? And what to include? Could telling the stories of the dying patients I've cared for provide insight for the living?  Might their journey through life, and life's end inspire us to live with courage and die in peace?  I hope so. 

The concrete insight embedded in the life-and-death stories of real people has helped me navigate aging and brought meaning to my living-while-dying. These stories are tough and evoke sorrow. The temptation is to look away, to think about something else, anything else. And yet. Our time, too, is coming. Is it not better to look, to learn, and to listen to those who can show us the way, rather than to avoid what is real, and for each of us, looming ever closer? 

I hope telling the stories of the people who taught me how to live, and how not to, will help Bob and others like him. Even when sad, these stories shine with transcendence. Our mothers and grandmothers learned how to live and how to die from those they cared for. Intergenerational wisdom was passed down in these moments of care, from one swab of a furrowed brow to another. Death, and those who were dying, were known to us and loved by us.  We were with them: their stories' were our stories, and we osmosed from them the way and the how of life and living and death and dying. 

These stories can teach us what we missed. Old wisdoms recovered can reincarnate our own caring.  

The best place to start is at the beginning, when I first began taking care of dying patients on an acute care oncology unit in Seattle during the early '80s.  Then, no hospice existed, so mostly people died in the hospital, cared for by nurses like me.  

Jerry: the best and worst patient I've ever cared for...

The first patient, whom I'll call Jerry, taught me how not to live and how best to die.  He is, perhaps, the worst person I've cared for in decades as a nurse, my most difficult patient ever.  

Jerry arrived on the oncology unit from the emergency room, dropped off at the curb by his family, who told staff there he had end stage cancer and they wouldn't be back.  Five minutes into his intake interview, I could tell why.  He was bitter, angry, and mean.  Tirades of toxic anger poured forth from him, and the profanities he slung at every nurse entering his room never stopped for as long as he could talk.  It was a challenge caring for him, so much so that we nurses traded him around daily, never taking more than a single shift with him in a row, if possible.  Still, it was brutal.  He threw things at us and lashed out physically.  More than once we needed help from security to keep safe.  

No one knew about his mental health history, but I bet it was significant.  He'd never been medicated though, and refused all offers of any kind of help.  Word from the ER staff indicated he'd been violently abusive to his family, hence the precipitous drop off.  

Jerry's physical status deteriorated as the cancer worsened.  He became weaker and weaker, but his anger never waned. After several days off, I returned to the unit to discover Jerry was finally comatose, and had been for 72 hours. Not conscious, not talking (or swearing), not eating, no response to stimuli, vital signs deteriorating, and actively dying was the report I got when assigned to him that day.  

I'll never forget what happened next.  

I went down the hall to check on him. Opening the door to his room, I peeked in, thinking I'd quickly see how he was doing, then return after providing am care to my other patients.  

But Jerry was near death.  Very near.  His breathing was rattling, agonal. He was diaphoretic, slick with a kind of sticky end-of-life sweat. There were long pauses between breaths, and his color was mottled, dark purple all the way up his legs, indicating his circulatory system was shutting down. I checked his vital signs, and they, too, were failing. His heart rate was high and blood pressure low. Clearly he didn't have long.  

It was a rainy day, and dark in that room. He was all alone. And dying. It was so sad.  

He'd lived badly, it's true.  But did he really need to die alone, without mercy or accompaniment?  No, I decided. He didn't.  I went over to his bed, speaking in his ear.  "Jerry," I said, "It's Eileen, your nurse.  I'm sorry you're uncomfortable: I'm going to see if I can help you feel better."  No response. 

Warming up the water, I soaked a washcloth, squeezed it out, then bathed his face gently, washing off the grime of sweat on his brow and face.  Next, I combed his hair, softy.  I soaked a pink mouth swab sponge in ice water, then, after draining it of excess water, moistened his parched mouth.  His lips, too, were dry, so I put a salve on them.  Grabbing the large pink hospital basin from the drawer, I filled it with hot water, and carried it to his bed. Placing a towel beneath it, I lifted first one leg, and then another into the warm water, soaking them, and washing his feet.  (I'd often had patients tell me a foot bath when in a hospital bed was more comforting and felt better than anything else.)  

When I was finished, he looked more comfortable, closer to his final breaths, but still comatose and unresponsive. Maybe there was yet another way to make him comfortable, I thought, one closer to his heart, and more essential to his soul.  I'd checked his chart and knew he was a baptized Catholic, perhaps a practicing one until some wounding somewhere along the way drove him away.  

I leaned toward him again, speaking softly in his ear.  "Jerry," I said, "You don't have long to live, minutes maybe, or a little longer. I know you had a tough life, and that your relationship with your family was fractured.  Maybe you wish you had done things differently.  Many of us do. Maybe you're sorry. Most of us are. If you like, I can pray with you." No response.  No indication he could hear.

"If it's OK," I told him, "We can pray, starting with the Lords Prayer." "Our Father, who art in Heaven, Hallowed by thy name," I prayed, alongside him. "Thy kingdom come, thy will be done, on earth as it is in heaven, give us this day, our daily bread, and forgive us our trespasses as we forgive those who trespass against us, and lead us not into temptation, but deliver us from evil. Amen."  

Once the prayer was finished, I said to him: 

"Jerry, God loves you. No matter what you've done or said, you are still His child. He loves you with all his heart.  If you're sorry about what you've said and done in your life or have regrets about what you've not said or done, just let him know now, in your heart. The God who loves you so much will forgive you and welcome you home." 

A moment passed. Then, Jerry opened his eyes. He looked right up at me, with what I can only describe as deep love and great peace. And breathed his last breath.  Though the day had been gray and pouring rain, right then, a ray of sunshine shone through the window, and landed on his pillow, bathing his face in light.

I cried, overwhelmed. That moment's grace has stayed with me forever, sometimes repeating itself in my own darkest days, giving me hope. 

Jerry's Lessons: Most of us aren't Jerry, but in his story we don't have to look far to see a part of our own.  Who has not wronged a stranger, friend, or loved one? Which of us has never used angry words or been distrustful, distasteful, or destructive? Have you, like me, hurt someone, even unintentionally?  Did you wonder, as I did, if forgiveness would be offered, or an apology accepted?   

Isn't it time, now, for us to learn from Jerry's mistakes, and our own, to face our life and end of life with equanimity and hope, kindness, and charity? Might we chart a new course as we navigate illness and aging, choosing to tack towards insight, light, and love? Could we, today, speak words of apology and forgiveness, gratitude and grace?  

Might we go further, and reach out to the Jerry's in our world, to people who are disaffected and broken, in need of tender ministrations and human touch? Or to families like his, battered and bruised, wounded by violence, hurt by someone they once loved?

To me, Jerry was akin to Dismas, the thief and revolutionary who died next to Jesus. We don't know much about Dismas's life, what he did, who he hurt, or why he ended up on a cross. But we do know what he said to the unrepentant thief about Jesus: "We have been condemned justly, for the sentence we received corresponds to our crimes, but this man has done nothing criminal." Turning to Jesus, he said,  "Jesus, remember me when you come in your kingdom” (Lk 23:43). Jesus responded, “Truly, I say to you, today you will be with Me in Paradise” (Lk 23:43).  Dismas was remembered and welcomed by Jesus into the kingdom, even before those who'd spent a lifetime advancing it.  

Dismas and Jerry's chosen violence and lived malice was forgiven by a loving Father, not forgotten, and certainly not approved of. Victims suffered, and likely still suffer the after-effects of Jerry's words and actions. Even today, I  pray for Jerry's family, hoping they, too, have found healing, and perhaps, in time, forgiveness. 

In his final moments, Jerry taught me that whatever any of us has done, no matter how many regrets we have, there is always a way forward. It takes courage to recognize wrong and seek forgiveness, but doing so leads to light and grace. And life-saving redemption.  

Esther, who knew how to live and to persevere, but not how to die...

A woman I'll call Esther was a long term cancer patient on our floor. Then, oncology patients were treated with chemotherapy in the hospital, rather than the clinics where patients receive treatment now.  Thus, we nurses already knew many of the patients by the time their condition worsened and their dying times approached. These patients weren't strangers to us: we'd known and cared for them them, sometimes for years.  

Esther was one such patient: she'd received chemo many times on our unit by the time it became clear her cancer was growing uncontrollably and further treatment was futile. Her symptoms were uncomfortable and her oncologist thought she could benefit from a hospitalization to control them, so she could die in comfort.  She came alone, as she always did. 

Ever slender, on this admission, Esther appeared emaciated. The chemo-caused nausea, vomiting, and chronic lack of appetite made it difficult for her to eat: she was wasting away.  A tiny woman, anyway, she practically disappeared into the huge looking hospital bed. Her expressive brown eyes loomed large in her gaunt face, more sad than I'd ever seen them.  

Still, each day she greeted me with a tired smile and a wave. She had a colorful scarf covering her chemo-caused baldness.  As usual, she wore a long-sleeved long underwear top under her baggy, impersonal hospital gown.  I knew from previous admissions she ran cold, hence the thermal top. She'd always refused help with bathing or a shower, preferring privacy in personal care.

As the days and weeks progressed, her weakness increased. Hip and arm bones jutted out from sockets, and her cheekbones, ever prominent, became sunken. Her caloric intake had been nearly zero for a long while: she  couldn't absorb food and had a tough time drinking liquids.  She was dying, but in micro-increments. 

Her physician had predicted death would come soon after admission, but Esther did not die then. For weeks she surprised us, and herself, by bypassing all the predictions of how long she could live.  Though she became so slender as to be almost invisible, and took nothing in by mouth, she kept living. She wanted to "let go," she said a few times, but she didn't quite know how. 

One morning, since she could no longer stand or make it to the bathroom, I arrived in her room to help her brush her teeth in bed.  I asked, as I had on previous occasions, if I could help her bathe.  This time, in a soft voice, cracked and dry, she whispered yes, requesting that I first close the door and the curtain surrounding her bed, and sit next to her. 

I did, and she turned those lovely, sorrow-filled eyes my way.  "I want to tell you," she said, "why I wear the thermal."  I listened, with all of me. She tried a few times to start, but each time she could not continue.  A tear glistened in her eye, then wound it's way slowly down the furrows of her face. She swallowed, twice.  

"Maybe I should just show you," she said. I nodded, not understanding, as she carefully rolled the thermal sleeve up her arm.  There, she told me, branded on her when she was a young girl at Auschwitz, was a concentration camp number.  It's ugliness and the horror it represented was starkly outlined on her emaciated arm.  

"I'm so sorry," I said, choked up.  "I did not know."  

"I know," she said, "How could you? This is why I never wanted help bathing: I didn't want you all to know.  I didn't want to have to talk about it."  

"You don't," I said, "If you don't want to talk about it, you never have to, not even now." 

Esther smiled, a little.  "I was so young, a teenager, and it was so long ago."  "My family, all of them, are gone.  I am the only one left. I think maybe it's time to talk about it: maybe it's why I can't die."

I sat alongside her in that industrial-looking hospital room, bereft of color, sterile appearing, the worst in institutional décor.  The plastic chair scraped on the linoleum as I moved it next to her bed, my ear close, listening to her soft  voice soft telling her story.  

She wondered if her body, long ago as emaciated as it was now, simply did not know how to die.  As a young girl, before the camps were liberated, she was, as she said, "skin and bones, mostly bones." And yet she'd lived, determined not to let them kill her, as they had her family and so many others.  She persevered and breathed, survived and eventually recovered, even while grieving her forever losses. She'd married, although her husband had since died.  He, too, had been a survivor.   

After awhile, she said, shaking her head: "Maybe my body doesn't know how to stop living and neither do I. I have never given up.  I have always persevered. Through everything. How do I stop doing that? How do I let go?" 

It was quiet for a few minutes.  I was listening, but did not know what to say. How could I?  I stayed with her.  Eventually answering her own question, she said, "Maybe I can just be me, even at the end.  Maybe I can let go without giving up or giving in. I think that is what I'm going to try to do. I'm going to persevere, and be strong until I stop breathing.  That is what I know how to do."  

She nodded, having come to an answer which worked for her.  She thanked me, with her words and her eyes. I helped her freshen up, and went on to the next patient.

Esther died a week later, in the way she'd hoped.  She worked to breathe, persevering, one breath at a time, until the still, small last breath. She let go without giving up. Then all was quiet. And she was at peace.  

Lessons from Esther and from other Holocaust Survivors:  

Our lived experience stays with us, right up to the last breath.  Blessings and sorrow,  struggles and successes, trauma and healing, are imprinted on us, grafted onto who we are, how we live, and how we die.  That's not to say we can't change: we can. Or that we can't learn from our life experience.  We must. But, like Esther, our past, good and bad, horror-filled and love-imbued, impacts us profoundly. 

No one, ever, anywhere, any place, at any time, should have to experience what Esther did. She had no choice in what happened to her, nor did her family, her community, her people.  During the Shoah, a state-sponsored murder of six million Jews by Nazis and Nazi sympathizers, evil men slaughtered innocents, whole families were incarcerated in ghettos, incinerated in gas chambers. 

It's not up to me to look for lessons or try to glean good in that atrocity. It's not my story to tell or my wisdom to impart. It is Esther, and those like her, who lived through the Holocaust, who can draw meaning from or interpret their suffering. It is she, and those like her, who provide lessons for our living and our dying. 

Esther said her experience in Auschwitz haunted her life, but did not devastate it.  She survived to live and to love. She lived a full life, even though it, and she, had been marked by unspeakable suffering. Her determination and perseverance were her choice: her interior strength, not a byproduct of that horror, but a decision she made during that time and in it's aftermath. She was proud to live and to die, determined and persevering.  She did not give up, ever.   

Eva Eger, Victor Frankl, and Eli Wiesel (See Resource List for Aging)  also survived the Holocaust. Each drew their own meaning, and wrote of sorrow-born wisdom.  Eva Eger, who wrote the Choice and the Gift, both excellent reads, has life-affirming wisdom about how to live life more fully. 

Here are Dr Eger's words, relayed by Elissa Felder, after an interview when the Choice was published. I think Esther, who died before Dr Eger started telling her story publicly, would have loved this wisdom.  

 1) "You don’t have crises; you have challenges. Dr Eger describes life as filled with suffering and struggle. Each challenge provides a chance to find hope in hopelessness. Every struggle is a gift, an opportunity to find light in the darkness. Dr. Eger states that, “My suffering made me stronger.” 

 2) You always have choices. It is not what happens to you that is important; it is what you do with what happens to you. Life is difficult. “I will never forget what happened to me,” she shared, “I came to terms with it. I call it my cherished wound.” Life is a choice. It is much easier to die but, “I choose to live.” 

 3) Live fully today. “I don’t take anything for granted. I have this one life to live and you don’t know what’s going to happen tomorrow.” She describes life as being like one long day. “The morning sunshine isn’t coming back, so celebrate each moment.” Each second is precious. 

 4) Pay attention to what you pay attention to. Your thoughts have the ability to create your reality, so be selective. Re-orienting your thoughts can impact how our lives play out since, “If you change your thinking, you change your life.” This was a lesson her mother taught her as they were being transported in the cattle cars to the death camp. Her mother told her, “No-one can take away from you what you put in your own mind.” 

5) The opposite of depression is expression, because what comes out of your bodies cannot make you ill. Dr. Eger spoke about the importance of feeling your feelings, that all our feelings are legitimate, and that there are no right or wrong emotions. “You can’t heal what you don’t feel,” so “Have a good cry. Go to the ocean and scream, or scream in the car and then laugh like a hyena.” She guarantees that grieving, feeling, and healing will make you feel better. Furthermore “My God gives me permission to feel any feelings without the fear of being judged.

6.) Love yourself and take care of yourself. Dr. Eger believes that we are born with love and with passion. However, throughout life we learn to hate and we learn the, ’us and them,’ mentality. “No one can replace you, so love yourself fully,” she advises. “When you get up in the morning do you look in the mirror and say, ‘I love you’?” Give up the need for approval and don’t let others bring you down.

7.)  Be selective with your anger. Dr. Eger pointed out, “Once you get angry you give your power away. When you are angry you can’t hear you. I’m very selective with who gets my anger. Dissolve the anger; it is inconvenient, and I don’t like it. We must keep on walking.”

8.)  Forgiveness is a gift you give yourself. “There is no forgiveness without rage.” Only God has the power to forgive. “I don’t have Godly powers,” she says. “Only God has the last word. I see forgiveness as a gift I give to me that I don’t carry. Forgiveness gives you ultimate spiritual freedom.”

9.)  God is always present. Dr. Eger says, “I found God in Auschwitz. My God was always with me. God told me that everything is temporary, nothing is permanent.” Furthermore, “God has a plan for me, not only to survive but to guide other people and to be useful to them. My God is full of hope, full of light, full of love, and full of compassion.”

10.)  Don’t give up. Dr. Eger describes herself as a woman of strength who is strong because of her Jewish identity. “We Jews never give up. My ancestors survived the desert and the Holocaust, so I say, ‘Keep climbing the mountain and don’t ever stop.’” Her life affirming mantra is, “Yes I am, Yes I can, and Yes I will.” After a lifetime of scaling the mountain Dr. Eger is still climbing, still giving to others, still trying to make the world a better place and still filled with curiosity about what will happen next."

I think Esther would affirm each of these messages, the last being the one she spoke about to me that long ago day.  She did not give up.  After climbing the mountain of illness and impending death, she let go, peacefully, living as who she was, strong and determined until her last, tiny breath.  May her memory be a blessing.

Yuka, a young Eskimo woman who travelled far to die on the remote island where she'd been born...

I'll never forget when I first saw the woman I'll call Yuka.  She was walking the halls of the acute care oncology unit where I worked, pulling an IV pole alongside her. She was 30 years old, and strikingly beautiful, even with no hair, dressed in a ubiquitous hospital gown, covered with a generic, flimsy, blue-striped hospital issued robe. She had large, luminous brown eyes, and even weakened with chemotherapy, she walked with grace. She had a great smile.

I cared for Yuka on numerous occasions during the many weeks she was on our unit. On days when she wasn't my patient, we greeted one another as she did her rounds, walking the circle of the unit, again and again, re-attaining and maintaining, her strength.  She'd wave, and I'd wave back, sharing a smile and a few words about how she was doing with her latest round of chemo. 

Whenever I was her nurse, she spoke of her home and her heritage, her hope for recovery, and her dream of going home to her young son Natsiq and her family.  Her mother, she said, was caring for him in Yuka's absence. 

Yuka talked about the beauty of Alaska, the traditions of her Inuit people.  She said she was born on a remote island, accessible only after several plane rides, then a ferry, then a kayak trip to the island. There was a small cabin there, where her mother had given birth to her, her grandmother as midwife.  The islands many seals had greeted her birth, barking their joy.  Seals, she told me, are a sacred symbol of innocence to her people: in bible translations, they are the "lamb."  Yuka said her grandmother, too, had been born on the island, and, when her time came, had returned to the island to die.  

She explained that her mother would return to the island when her time came, as would Yuka, and hopefully, in a long, long time, Natsiq, because in the Inuit tradition, dying where you were born was necessary in order for you pass to a new existence in the afterlife. She talked about others her age and their disregard for some of the traditional ways and beliefs.  But, even when describing her life as a young woman in a modern Alaskan town, she spoke of her honor for her elders and the old ways they maintained.  

Yuka knew her cancer was advanced and she'd come from Alaska in hopes of curative treatment.  The chemo prescribed was aggressive, the side effects extensive.  As the days and weeks passed, she got worse and not better. 

Eventually, Yuka's gait began to falter and her skin turn to yellow.  She walked slowly, only one circuit around the unit.  The cancer, in her liver now, was growing steadily, despite the treatment.  Her abdomen, with ascites, had became distended and tight.  Before long, the whites of her eyes were yellow too, a sign that her liver enzymes were increasing dangerously and liver failure was occurring. Since her liver wasn't functioning well, she was more prone to bleeding. 

Still, she was being treated with aggressive, side-effect intensive, curative-focused chemotherapy.  Her oncologists, wanting to save the life of one so young, kept piling on meds, telling her that this new med or that new med might save her.  She thought, because her doctors were so optimistic and enthusiastic about each, new, experimental option, that she had a real chance of recovery and would eventually go home. 

She did not know what I did: that these doctors wanted badly to cure cancer, and believed they could, somehow, some way. They had hope-blinders on, preventing them from seeing what was real in a patient's clinical deterioration until all hope for recovery was extinguished, and only days or weeks remained. In a way, it was like the magical thinking of small children: they wanted her to be better, and so they imagined she would get better, if only they kept trying.  

But Yuka's chemo related side effects, combined with her obvious clinical deterioration, made clear to me, and to every nurse caring for her, that she didn't have long to live. When the team of oncologists and residents were doing rounds the next day, I updated them on Yuka's deteriorating clinical status and her most recent lab results, saying I thought she was appropriate for hospice and palliative care.  Her attending physician nodded his head slowly, looking pained.  

"You're right," he said, "We don't have anything else to offer."  

I asked that he gently update her on the seriousness of her condition, so she could make her own choices about what she wanted to do in the days and weeks remaining. He concurred and entered her room. Sitting with her, with the medical team gathered around, he told Yuka all available  treatment had been tried and failed, that she now qualified for hospice care.

She looked shaken. "There's nothing else you can do for me? To help me get better? Or to give me more time?"

"Nothing," he said.  "I'm sorry.  I wish there were. We tried everything we could think of."

The team left the room shortly thereafter.  Yuka sat in her brown, faux leather hospital recliner, a standard white hospital blanket over her legs, staring into space.  I sat next to her, offering quiet support.  A few minutes later, she said, "It's true, then?  I'm going to die?" 

Leaning forward, I nodded, slowly, saying, "I'm so sorry, Yuka.  You've fought this so long, so well, and with such grace and courage. I'm here for you.  Let me know if you want to talk, sit quietly together, or be alone."  

She replied, "I'm glad you're here.  It helps. I don't want to be alone right now."  

Looking out the window now, to the urban cityscape below, she thought for a bit, then said, "I'm not really that surprised. I just kept hoping it would be different. I wanted to keep trying, for Nariq and my mom.  But I didn't know it was as bad as it is.  They kept saying they could do something, give me more time, at least." A few minutes passed, a few tears falling.  Taking several tissues at a time from the tiny, standard issue hospital Kleenex box on her bedside table, she wiped the falling tears from her cheeks. Her tears, too, were yellow. 

"My mom has been such a good mom to mem" she said.  "Now she'll have to be Nariq's mother and his grandmother. She said she would, if it ever came to this. We hoped it wouldn't."   

Yuka had more questions: We spoke about her liver enzymes and what the increase labs numbers and liver-related symptoms meant.  We talked about managing her symptoms and her pain, and how, no matter what time she had left, she need not to suffer.  She asked what her final days and moments would look like: she wanted to know what to expect.  I told her most likely she'd get more sleepy, from the increase in liver enzymes, and that should she have pain, we'd make sure it was controlled.  She was relieved, and asked a few more questions, which I tried to answer the best I could. 

Remembering our conversation about the island of her birth, and knowing how limited her time might be, I asked if she could go to her island spiritually, while her body stayed at the hospital, or if she had to be on the island physically to assure her rebirth.  

She looked up, eyes widening in horror. She shook her head, frowning. "I can't die here!" she exclaimed. "I have to be on the island! I have to.  There is no other way!" She started to breath quickly, and began again to cry.

Her voice choked, up, she continued, "I have to be back on the island, with my mother. I have to. It won't work just to think about being there in my mind. My body needs to be there physically: all of me needs to be present so I can go to the afterlife in peace."  

I nodded, and said, "Ok. I'm going to do my best to get it arranged as soon as I can.  There will be a lot to figure out, but we're going to try and figure out how to get you home, and to your island.  But, Yuka, it will have to be soon, and we'll have to talk to your Mom about how to make it work out."  

"Thank you," she responded. "Thank you." 

I walked to the nurses station, where the doctors and staff were still gathered.  I relayed my conversation with Yuka about her need to go home to Alaska to the island where she was born, to die.  The attending doctor looked up, and said, "I don't think that is going to happen. Sorry. She's too sick and too close to death.  She'll be right here in the hospital, and with those lab values, it won't be long." 

I said, "Why not? Why can't we fly her home?"  He said, "Her liver enzymes are very high: her liver function low.  She'd be at risk of bleeding during the flight.  And, besides, anyone looking at how yellow she is on that flight is going to be upset. No one wants someone sitting next to them that looks like that." 

The social worker added, "I don't think she has money for a sudden flight home, anyway. People from her town raised the money to get her here for treatment."  

I said, "I think we can do this. And I think we should do it.  It's the right thing to do.  We waited too long to tell her her prognosis.  That's on us. She needs to get home before she dies.  Yuka believes if she doesn't die on the island where she was born, she has no hope of eternal life. I asked her if she could go to the island virtually, instead of physically, but she said that won't work. Her body has to be there.  We have to try everything we can try. If it doesn't work out, we'll have done all that we could." 

The attending doctor, reflecting, said, "I guess you could try it. If you want to. And if she's stable to fly."  

The social worker nodded, as did one of the resident doctors, both women of good heart.  The social worker volunteered to call Alaska Airlines, to see if a free or reduced flight and disability services, with a wheelchair could be arranged. She'd follow up with Yuka and her mother about how to coordinate care and the medications she would need for her end of life comfort.  

The resident doctor thought for a bit and said, "We could give her medications to lower her liver enzymes and cryoprecipitate before the flight to decrease the chances of bleeding." I added, "Maybe we can put some sunglasses on her so no one on the flight is worried about her yellow eyes." "But a family member will need to come down, and fly back up with her.  Flying alone, so sick, wouldn't work."  The social worker nodded.  "I'm on it," she said.  

It ended up being a sprint of a discharge, with a lot of good, fast work by a team of committed staff. And it worked out. No one had done anything like this before, but once we decided, nearly everyone was all in. Alaska airlines offered a free flight to Seattle from Anchorage for a friend of hers, and then back to Anchorage for both.  Another local airlines, affiliated with Alaska there offered a trip to a smaller town, where a ferry would take them to another island.  

Yuka's family arranged the kayak trip, and planned to prearrange all the supplies they would need at the cabin. Her mom was contacted several times: she'd be there to pick Yuka up from the flight. Nariq would be able to see his mom one last time. (The island cabin had only one room, and was rudimentary. They didn't feel it would be good for Nariq to be there.) Family would help kayak Yuka to the island. 

Medications, treatment, and cryoprecipitate was given, her liver numbers improved enough for doctors to think she could fly safely.  I saw Yuka the day before she left.  Her friend was arriving later that day and they would leave the next afternoon.  Yuka smiled tiredly, brown eyes relieved, and thanked me for helping her go home. She thanked everyone on the staff who helped, and in some way, that was just about all of us.  Yuka looked frail that day, but determined.  I hugged her, and wished her the best of luck in her homecomings, both to the island, and beyond. Unshed tears were in both of our eyes.

A few weeks passed: None of the staff on our unit heard anything about Yuka and how things had gone.  Finally, several weeks after she left, we heard from her mom:  Yuka had made it her tiny island home in time to die. And she'd seen Nariq too. The kayak trip had been rough, but they had everything they needed in the tiny cabin. The rest of her end of life comfort plan had worked well: she did get more sleepy, and, fortunately, her pain was controlled.

Her mom said she was with Yuka when she breathed her last breaths. Yuka had died dying peacefully and comfortably, holding her moms' hand. Her mom said the they heard the islands seals barking rambunctiously during the time just before and after she died. 

Yuka's Lessons