Perspective on death from a dying man

The family stops on a country road. Ted stands outside, listening to the wind as he often enjoys during the road trips. He turns around to look at his children and grandchildren, but they’re already in the car driving away. He’s alone.

Ted wakes up.Ted Dotts

He rustles around and realizes it was a dream Still, it is the closest the 80-year-old Lubbock resident has ever been to fearing death.

Dotts fears becoming an ugly, grouchy old man when medication can’t alleviate his physical pain. But he doesn’t fear death.

He knows it’s inevitable.

He has known that ever since he was diagnosed with prostate and bone cancer in September — ever since he decided to opt against curative treatment for the crippling disease, refusing to put the burden of his health on taxpayers.

“My life — I’m richly happy, probably happier now than I’ve ever been, and that lasts through the day most of the time,” said Dotts, pastor emeritus of St. John’s United Methodist Church. “Death is a matter of releasing me from anything that’s less than God … and I get ushered into a new life and then I’m trusted to make whatever is to be made.”

Preparing for death

Two yellow folders are taped on a closet near the entryway of the Dottses’ home.

Betty’s folder is simple: An out-of-hospital “Do Not Resuscitate” order in case she dies at their apartment at the Carillon LifeCare Community in Lubbock.

Ted’s orders, written in all caps, are more detailed: No CPR. No hospital. No EMS-ambulance. No ER. No antibiotics. No tracheotomy. No breathing assistance devices.

While the doctor’s orders stop there, it’s followed by 12 phone numbers for Betty to call when her husband inevitably dies.

The couple has talked about death for years — not every day, but enough to understand each other’s end-of-life wishes. But after Ted’s cancer diagnosis, death became more imminent.

“(When I found out,) I had a feeling of the heart just sinking, like the bottom had dropped out,” Betty said. “But I also, in my thinking, knew ‘Alright, this is a time to prepare yourself.’ ”

She is not only preparing herself for the emotions that will surround the death of her husband, but the practicality of it.

Without Ted’s help, Betty will be completely alone in running their household, including finances that Ted manages online.

“I don’t like computers, so I’m learning about the computer,” Betty said. “He’s very careful with all our money and how it goes and where it goes to and so forth, so he’s teaching me.”

When a person maps out different scenarios for his death and decides what he’d like to do in each situation, it lifts a burden from any family who may be stressed out about what to do following a terminal diagnosis, said Charley Wasson, executive director and CEO of Hospice of Lubbock.

He said it also takes away second-guessing and allows families to make end-of-life decisions confidently instead of out of fear.

As Betty takes care of her husband during his illness, Ted knows she’s already suffering the grief of losing him.

Ted also experiences grief in not being able to take care of Betty when it’s her time to die.

“I’ll be gone and who will be that close to her? Children, of course, but they have their own lives,” Ted said. “You can hire doctors and nurses, but it won’t be anyone that close to her as she is to me. … That’s a loss that I have and every day I have to see her and know that she’ll have to go through much of this death by herself and won’t have me there to do what she does for me.”

Making the decision

The shots would cost $5,000.

It was too much.

Ted knew the treatment would be covered by Medicare. But, he already had his rules in place, including not using community resources to prolong his life for only a couple of months when he had already exceeded the life expectancy for the average American male.

After the cancer diagnosis, the doctor told him about the recommended treatment, including radiation, surgery and, of course, the shots.

“After you’re 80 years old, some studies show you’ll spend more on the last six months of your life then you spent your first 80 years of your life,” Dotts said. “Some of those expenses are extremely high.”

Created in 1965, Medicare was intended to answer growing reports of impoverished seniors languishing or dying because they lacked health insurance.

According to Centers for Medicare & Medicaid Services, more than 50 million seniors and nearly 3 million Texans are enrolled in the government program. Even though Medicare spending is trending down by nearly $1,200 per beneficiary, overall spending grew 3.4 percent to $585.7 billion in 2013, or 20 percent of the nation’s total health expenditures.

Dotts doesn’t want any part in it.

Instead of spending Medicare funds on prolonging his already fulfilling life, Dotts said he would rather those funds be available for his 18-year-old grandchild or 40-year-old child.

That’s one of the main reasons that outside of pain medication, Dotts isn’t taking anything to treat the cancer.

“I’ve known Ted for years and so he had a very thoughtful, long progression of thought. He’s held this standard that this is how he’s going to die: He’s not going to use community resources and he is going to utilize hospice for years,” Wasson said. “That’s not only a gift to himself but a gift to his family and the people around him. He’s very comfortable in that decision.”

Wasson said he agrees with Ted’s decision to focus on quality of life rather than prolonging it.

“If many people had the opportunity to talk to Ted and his rationale about why he made that decision many years ago, why he’s held true to that decision for many years, I think a lot of people would see wisdom in it,” Wasson said. “But I don’t think a lot of people get to because they don’t have the conversation.”

Ted and Betty moved to the Carillon LifeCare Community seven years ago, knowing they’re at the other spectrum of life.

Although Betty said Americans may be living longer, there’s still a responsibility to take care of future generations.

“It’s just not fair for our children and grandchildren, just because he could spend a lot of money (on cancer treatment) and Medicare would pay for it,” Betty said. “But somebody is paying for that and money is going to be taken from here to give to there and he said, ‘I do not want to take the community resources from others just so I could live a few more months.’ ”

Dealing with the pain

Betty imagines her husband falling to the floor as he’s walking up the stairs to their apartment. Other times she pictures him stumbling and pretending to faint. Betty knows it’s not real; they’re simply imagining for the inevitable.

“There’s so much involved. It’s a major event in life to die and we try to get through it without talking about it, but then all of a sudden you’ll be faced with it,” Ted said. “We get to share that and the rich depth of (imagining death). I thought we were pretty close but we’ve gotten closer than I ever dreamed now that death is next door.”

Although he hasn’t broken any bones yet, Ted’s pain varies on a daily basis. Eventually it was bad enough that he received a shot that doctors assured him was not for longevity, but rather to help alleviate the severe pain.

“They warned him the pain is going to get worse for two weeks and then it will drop, and so on a scale of 1 to 10 he got at least to a 7 and maybe higher,” Betty said. “You can’t sleep when you have that kind of pain, but then it did drop after two weeks and it’s gone down. … Many people live with pain and it’s learning to manage the pain. It’s not that he doesn’t feel it, but it’s where it doesn’t dominate him.”

Despite the pain Ted endures, Betty said she wasn’t surprised by her husband’s decision to receive palliative care rather than curative treatment.

“His personality is one in which he thinks things through and reasons things through, tries to see both sides and to see the larger picture. He does not just jump into something, knee-jerk,” Betty said. “Most mornings he will be studying for several hours and he studies not just the Bible or theology, but psychology or history and certainly death.”

Lasting legacy

By helping residents with paperwork for food stamps, the Dottses still connect with the community around them despite living in a retirement home. They know their pain will end soon and that it doesn’t compare to the suffering others endure daily.

Ted hosts local radio show “Faith Matters” but has contributed to the community in the past as a longtime clergyman and his work as former senior vice president of ethics and faith for the Covenant Health System.

The Dottses also started the first Parents, Families and Friends of Lesbians and Gays in Lubbock in 1993.

“We started the PFLAG and that was overshadowed with fear and anxiety of persecution or vandalism or maliciousness. I don’t think that’s near as possible now, plus you have gay marriage that has passed in several states so I think it’s a movement that’s thriving and flourishing and helping people care for each other,” Ted said. “I go to sleep at night, and Betty does too, very grateful that we got involved. … People who have same-sex love and they’re persecuted over it, it can make them mean and bitter but for the most part.”

And through panel discussions at churches around Lubbock, Dotts has also shared his end-of-life decision with the community, once again bringing to the forefront a topic that may be difficult for some people to face.

Wasson said he hopes Ted’s openness inspires residents to talk about end-of-life decisions and discuss at what point it becomes about quality of life, rather than treatment to add a few months or years of battling an illness.

“In America we are a death-averse society. We don’t like to talk about death, which is why Ted’s talk the other night was so special, because he was very honest and open about death and his journey,” Wasson said. “I think this is quintessential Ted. He is great at bringing people together and talking about the tough in life and doing it with a great amount of grace and eloquence.”

Accepting death

Ted doesn’t know if he has two months left to live, or two years. But, the couple’s faith puts them at ease.

“I don’t think God even notices whether we’re dead or alive,” Betty said. “It doesn’t matter that much; we are still loved by God whether we’re here or there, and what there is, we don’t know, we haven’t been there. But, it’s our faith and that trust (that) we’re going to be cared for and loved and it’s going to be alright. It’s going to be good so I don’t have to get all uptight (about dying).”

They do have their moments of grief, but the couple mostly laughs and teases one other.

They realize this time next year, Ted may be dead, but the talks about his death have brought them closer.

“It’s like being able to see into each other’s heart and to be right with them,” said Betty, who will turn 79 in a few weeks. “He kept saying he wanted to live longer so he could take care of me when I died, but he’s dying first.”
Complete Article HERE!

Rural Doctor Launches Startup To Ease Pain Of Dying Patients

By April Dembosky

Dr. Michael Fratkin is getting a ride to work today from a friend.

“It’s an old plane. Her name’s ‘Thumper,’ ” says pilot Mark Harris, as he revs the engine of the tiny 1957 Cessna 182.

Fratkin is an internist and specialist in palliative medicine. He’s the guy who comes in when the cancer doctors first deliver a serious diagnosis.

He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they’re willing — and not willing — to undergo.

In rural Humboldt County, in the far northern reaches of California, Fratkin is essentially the only doctor in a 120-mile stretch who does what he does.

“There’s very little sophisticated understanding of the kinds of skills that really matter for people at the very end,” he says.

It takes 30 minutes to fly from Eureka, Calif., to the Hoopa Valley Indian Reservation. On this trip, Fratkin is going to visit a man named Paul James, who is dying of liver cancer.

“A good number of patients in my practice are cared for in communities that have no access to hospice services,” Fratkin says.

The plane touches down on a narrow landing strip. A loose horse runs next to the plane as we taxi down the runway.

Fratkin is here to make a rare house call. He met Paul and his wife, Cessie Abbott, at the hospital in Eureka. But the two-hour drive is too far for them to make often, so Fratkin comes to them.

It’s a visit that Cessie, in particular, has been waiting for. She and her husband know he’s dying. But it’s hard for them to talk to each other about it.

“Dr. Fratkin has kind of been my angel,” she says. Fratkin gets her husband to open up, she says, and reveal things he might not otherwise, because Paul’s “trying to be strong for us, I think.”

Cessie tells Fratkin that the pain in Paul’s belly has been getting worse.

“He’s moaning in his sleep now,” she says.

“Have you ever taken morphine tablets?” Fratkin asks Paul. Cessie explains that those tablets didn’t work for her husband. “Have you ever taken methadone?” Fratkin asks him. “We’re going to add a medicine that is long-acting.”

Fratkin believes there should be a spiritual component of these discussions, too.

“Yeah, Paul, there’s more to you than this body of yours, isn’t there?” he says, a refrain he repeats with almost all his patients.

“Oh yeah,” Paul says, and then goes quiet for a bit. He’s a member of the Yurok tribe, and talks about how happy he is when he’s in the mountains, hunting with his grandsons.

Cessie says she can hear Paul praying when he’s alone in the bathroom. So Fratkin asks him to light some Indian root and say a prayer now.

“Great spirit, that created this earth …,” Paul begins, his eyes clenched shut.

By the time Fratkin leaves the Hoopa Valley, he’s spent half a day with one patient. This is something the hospital in Eureka just couldn’t afford to have him do.

Fratkin says he was under constant pressure to see patient after patient to meet the hospital’s billing quotas.

“It’s very hard for one doctor to manage the complexity of each individual patient and to crank it out in any way that generates productive revenue,” he says.

Fratkin decided he couldn’t, within the hospital system, easily provide the kind of palliative care he sees as his calling. So he decided to quit — and launch a startup.

“I had to sort out an out-of-the-box solution,” he says.

He calls his new company ResolutionCare. There’s no office, no clinic. Instead he wants to put the money for those resources into hiring a team of people who can travel and make house calls, so that very ill patients don’t have to get to the doctor’s office. When time is stretched, he plans to use video conferencing.

The key challenge is financing his big idea. Government programs like Medicare and Medicaid don’t pay for video sessions when the patient is at home. And they pay poorly for home visits.

So far, Fratkin has been cultivating private donors and is looking for foundation grants. He’s arranged an independent contract to sell his services back to the hospital he recently left. And he’s launched a crowdfunding campaign to back the training he’d like to do for other doctors of palliative medicine who practice in rural areas.

Down the line, Fratkin is even thinking of asking some of his more well-off patients to pay out-of-pocket for his services.

When he gets back to Eureka, after the visit with Paul James, Fratkin hops in his blue Prius and drives 30 minutes north to see Mary Maloney. She’s dying of esophageal cancer. She tried radiation and chemo for a while, but both made her feel awful. Fratkin was the one who told her it was OK to stop treatment.

“I mean, I love life,” Maloney says from the recliner in her home in Blue Lake. “I don’t want to let it go. But I don’t know if I’m willing enough to put myself through all the things I’d have to put myself through.”

Fratkin says he’s treated more than a thousand patients and, like other entrepreneurs with big ideas, thinks his startup could change the world. He knows he’s up against tough odds though — most startups don’t succeed.
Complete Article HERE!

Arguments against Brittany Maynard’s assisted suicide ignore her point of view on suffering

by Kelly Stewart

Brittany Maynard died earlier this month.

Diagnosed with incurable brain cancer at 29 and given six months to live, Maynard relocated to Oregon to take advantage of the state’s death with dignity law. The law permits “mentally competent, terminally ill patients with a prognosis of six months or less to live” to access, as Maynard describes it, “the medical practice of aid in dying.”dignity_human

Maynard became an advocate and public face for the death with dignity movement. In an opinion piece for CNN and a widely viewed video, she describes the severity of her physical and emotional suffering, the comfort of knowing she can “end [her] dying process if it becomes unbearable,” and the importance of making that option available to people without the “flexibility, resources and time” that allowed her and her husband to relocate.

“Consistent life” Catholics have been some of Maynard’s most fervent critics. Pope Francis didn’t mention her by name but denounced the “false sense of compassion” that motivates death with dignity and abortion rights laws. Various other Catholic responses have characterized her death as evidence of the cheapening of human life; an act that denies the dying person’s responsibility to others; an affront to the dignity of dying people; or even a “slippery slope” that leads to eugenics and genocide. And consistently, Maynard’s Catholic and other Christian critics have appealed to the redemptive value of suffering.

Michael Sean Winters’ blog post “Brittany Maynard’s Suffering” is representative. He writes: “Christians must reclaim the ability to embrace suffering.” He offers a few caveats: We shouldn’t be masochists, and we should work to alleviate some forms of suffering, especially “those varieties of suffering in which we are complicit.” Still, he insists, “in the face of some experiences of suffering, we must never lose sight of the need to embrace it.”

Death with Dignity CampaignFor Winters, Maynard’s decision is fundamentally about a refusal to embrace suffering as meaningful — and, therefore, a refusal to acknowledge human finitude, vulnerability, and radical dependence on God. He characterizes this as a U.S. cultural as well as a generational problem. Children and young adults today, he suggests, have been sheltered from the raw experiences of pain and loss that accustomed earlier generations to the inevitability of suffering and instilled respect for its spiritual value.

Cathy Lynn Grossman’s blog post for Religion News Service “Does Suffering Have Spiritual Meaning?” takes a similar approach. Like Winters, Grossman frames the death with dignity question in terms of a spiritual vs. secular divide. The religious voices she includes in her article all oppose right-to-die laws: a Baptist woman whose teenage daughter has brain cancer, Popes Benedict XVI and John Paul II, and Jesuit Fr. Kevin Fitzgerald.

“When can we say that the potential to grow or overcome or bear that suffering, that potential which made that suffering meaningful, is gone forever?” she quotes Fitzgerald as saying. “Why do we think someone is enlightened enough to know their suffering is not redemptive?”

Grossman does not, however, spend much time on Maynard’s moral reasoning. Instead, she frames Maynard’s decision as a secular, perhaps youthful abandonment of serious reflection on suffering.

“Her choice to die,” Grossman writes, “may reinforce to many — particularly religiously-disengaged millennials — that spiritual meaning, like suffering, is up to you.”

Readings these responses, I have been struck by how tenaciously Maynard’s critics avoid engaging her actual arguments and how little detail they offer in support of their own positions.

They write moving personal reflections on the deaths of loved ones. They offer general tributes to the relationship between love and vulnerability and suffering. They incorporate a few laments about secularism and young adults. But their discussions of Maynard, the death with dignity movement, and even their own theologies of suffering seem to remain at a general level.redemptive-suffering-statue-with-tears

That’s a problem, because when we discuss a concept whose history is as ugly as that of “redemptive suffering,” it is irresponsible to be vague. When we discuss the Christian meaning of suffering, it is irresponsible to ignore decades of feminist, womanist, and postcolonial work on the problems with its valorization in Christian theology. And when an actual suffering and dying person tells us, “This is more than I can bear,” it is irresponsible and cruel to respond that she couldn’t possibly know that.

Before she died on Nov. 1, Brittany Maynard made a case for the right of terminally ill people to end their suffering quickly. She argued that no one else could say when her suffering became intolerable, when her life became unlivable, when her dignity was diminished, or how she was to face her painful and untimely death.

If you read her arguments, listen carefully to her experiences of illness, and maintain — from a position of relative health and safety — that Maynard should nonetheless have embraced her suffering as a redemptive experience, please be careful, suspicious of yourself, and painstakingly detailed in how you make that case.

Under what conditions is suffering redemptive? By what criteria do you distinguish suffering that should be alleviated from suffering that should be embraced? When should your theology of suffering be imposed on people who do not understand their suffering as redemptive? What are the consequences of doing that? What are the consequences of not doing that? Is the embrace of suffering as “countercultural” for others as it is for you? And how do you know you’re right?

These sorts of questions should guide discussions of Brittany Maynard’s death and activism. And they should make us very cautious about finding grace in someone else’s suffering.

Complete Article HERE!

End-of-life care: balancing money, time and quality of life

During elementary school, we bought a hamster, Nibbles. At two years old, she developed swelling in her abdomen. Most hamsters only live a year or two, so Nibbles had reached a ripe old age. Instead of letting her expire and watch the inevitable circle of life continue, my family took her to the vet to get her stomach drained. The procedures, costs and time spent were irrelevant because she died shortly after. While this may seem like a trivial story about a young boy unwilling to part with his first pet, there are broader lessons for our spending on end-of-life health care. I’m not comparing the value of a hamster life to a human one, but the basic principles and approaches to care are

According to a 2013 article from the Medicare News Group, the Center for Medicare and Medicaid Services reported that 25 percent of the 2010 annual Medicare spending went towards the 5 percent of Medicare beneficiaries that died that year. There are two staggering points embedded in this fact. First, a quarter of the budget went towards 5 percent of the beneficiaries, and second is that Medicare spent $131 billion ($524 billion annual budget) in 2010 on people that never saw 2011.

One of the biggest barriers to fixing our skyrocketing end-of-life spending is our society’s profound discomfort with death. At its root, it’s a cultural problem—young people don’t understand death. We learn from a young age to resist the concept of death, and parents propagate this by shielding their children from the inevitable. And yet, the reality is that one day everything dies. In Atul Gawande’s 2010 New Yorker article “Letting Go,” the author writes that “modern medicine is good at staving off death with aggressive interventions–and bad at knowing when to focus, instead, on improving the days that terminal patients have left.” When we have the tools to prolong life, it’s hard to resist the temptation. How can we expect patients and families to make decisions that fly in the face of their gut instincts–to extend the life of themselves or their loved one? How can we expect doctors to make decisions that go against their training? As Siddhartha Mukherjee wrote in his book, The Emperor of All Maladies: A Biography of Cancer, “In new and sanitized suburban towns, a young generation thus dreamed of cures – of a death-free, disease-free existence. Maybe we need to reevaluate our priorities. All too often these life-prolonging interventions sacrifice quality of life for the patient in the name of extending it.

EndOfLifeCareSOS024HIRESsmallOne way to incentivize different end-of-life treatment regimens involves changing how we pay for end-of-life care. In theory, we could limit spending by having payers deny coverage for aggressive procedures to people who are very old and very sick. However, that is clearly neither a legal option nor a moral one. Moreover, the onus of cost control does not fall on the payer. Instead, it should be the physician’s responsibility to steer patients to lower costs and more effective hospice and palliative care programs. Focus on the doctor-patient relationship—not the pharma-patient or hospital-patient relationship—has become paramount in the world of health care. It would be a waste not to use this connection for the best interests of the patient.

By some measures, it may seem like we’re already moving towards more utilization of hospice and palliative care. The CDC reported in 2011 that Medicare beneficiaries are dying at a later age—and less frequently in the hospital. Hospice-use at time of death for Medicare beneficiaries almost doubled between 2000 and 2009, from 21.6 percent to 42.2 percent. The transition to hospice is great because we know that an acute care hospital is the most expensive place to die. However, that’s not the whole story. The data in their report, published in the Journal of the American Medical Association, suggest that hospice care has largely become an “add-on” to acute care hospital stays, so there may be less effect on resource utilization than was previously imagined. In 2009, 40.3 percent of “late-hospice referrals” followed on the tails of an ICU stay, a measureable increase from 2000.

Another important consideration is length of hospice stay. Maximum cost-savings in hospices are achieved when patients stay at least seven weeks. However, the percentage of Medicare beneficiaries (who are also cancer patients) who stayed in hospice for less than or equal to three days increased from 7.6 percent to 12.7 percent from 2000-2009. Overall, the percentage of decedents with less than or equal to three day hospice stays increased from 4.6 percent to 7.6 percent. This change suggests that while more people may die in hospice, they don’t necessarily spend a lot of time there.hospice025

It is important to acknowledge the difficulty in addressing end-of-life care. After all, a major hurdle lies in identifying the last year of life. Unfortunately, the process for this determination starts after the patient dies. Researchers measure back 365 days to examine the care received in the last year of life. Physicians can give prognoses of “six months to live” or “two years to live,” but those are often incorrect. Regardless of how much data CMS collects on end-of-life spending, it remains hard to address the problem because there is no way to know that you’ve entered the last year until it’s over.

Unlike Colorado’s former governor Richard Lamm, I don’t believe that the elderly have a “duty to die and get out of the way.” I do believe that we as a society have two responsibilities: to ensure the most comfortable death possible for the elderly and their families, and to spend our health care dollars in ways that improve patient health. It just so happens that hospice and palliative care can achieve those complementary goals, whereas inpatient hospital stays tend to work in opposition of them both.

Coming back to our circle of life, I wonder how I would have reacted if the vet had told me Nibbles was dying and there was nothing I could do. I can’t imagine I would have reacted well. Reflecting on the experience over a decade later, I realize that we must first grapple with death as individuals and learn to take comfort in the inevitable. Only then can we collectively address end-of-life care to make it more efficient and more focused on providing comfort, rather than aggressive cures, as a patient approaches death.

Complete Article HERE!

Bringing To a Close a Long Life Together

“Each of us is entitled to intimacy and pleasure in our life, regardless of how our body looks or at what stage of life we are at. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.”

Clare, 73, and her husband, Charley, have been married for fifty-three years. They have four children, nine grandchildren, and five great-grandchildren. Clare’s leukemia, which was in remission for over ten years, has recurred. This time it is considered untreatable. She has decided to forego any of the heroic, life-sustaining measures for which modern medicine is so famous. She and her doctors agree that hospice is her best option. “I’ve done my homework. I’ve shopped around. I interviewed all the hospices in town and have chosen the one I feel will honor my wishes for the kind of end-of-life care I want.”

our-livesClare has lived a rich and full life. “I was a career woman long before there was such a thing as a career woman. I’ve always been a take-charge kind of gal. This leukemia may very well kill me, but it will never get the best of me.” Her illness has made her very frail. Her skin is almost translucent. She has an otherworldly look about her, but there is no mistaking her remarkably robust spirit.

Her youngest son Stan, her one and only ally in the family, brought her to our meeting. Stan says, “Oh yeah, she’s feisty all right. There’s no flies on her, and the ones that are there are paying rent.”

Clare’s biggest concern is her family. They are pressuring her to fight against death even though she doesn’t want to. She wishes that they would join her in preparing for her death rather than denying the inevitable.

“I worry about how they will manage when I’m gone. And even though I’m ready to die, I feel as though I need their permission before I can take my leave.Elderly-couple

I try to tell myself that my Charley will be just fine after I’m gone. After all he does have our four grown kids and their families to look after him. But deep down, I know how lost he’ll be without me. Even after all these years, he still needs me to help him find a missing sock!

Whenever I try talking to him about how he’ll manage when I’m gone, he gets this awful flush across his face and starts shaking like a scared little boy. It makes me feel so terrible. I feel so bad for upsetting him like that.

I’m so confused! I want to talk to Charley about all of this. He’s my husband and has been my best friend for well over fifty years, but I honestly don’t know how to reach him on this one.”

Clare straightens herself up in her chair and continues.

“Stan, here, is the only one I can talk to. Everyone else, including my husband, won’t hear a word when I start talking about planning my funeral or who will get my antique Tiffany lamp. They just say, ‘Oh, mother, stop talking like that, you’ll outlive us all.’

I know they mean well. They’re just scared and upset. But boy oh boy, it’s really getting under my skin. I know I only have a short time left to live, so I want it to be real. I’m sick of always having to smile and pretend when I’m with them. It’s about time for them to start considering my feelings for a change.”

reason to smileClare’s immediate concern and the reason for our get together is her husband Charley. She is afraid that they are drifting apart right when they need each other the most. I ask her for a little background on their intimate life together.

“I was well into my thirty’s when the woman’s movement began. It was a time of great awakenings for me. Charley was threatened, of course, but I was able to win him over in time. It was only then that our sex life started in earnest. I finally realized that sex could be about pleasure and not simply about duty. What a liberating experience that was!

Even now Charley and I are intimate, or were until the last couple of months or so. After we both turned 60 our sex wasn’t like when we were youngsters, all heated and hormonally driven, but it’s just as special. Oh, I’m so glad I am able to talk about this with you.

My main concern is the medications I’m taking for the pain. I’m woozy when I take them, but irritable without them. I want to be more available to Charley for the closeness that’s so important to each of us, but I’m often too out of it. This is a problem for Charley too, because he doesn’t know how touch me anymore. And so, I’m afraid, he keeps his distance. This only makes matters worse for the both of us.

How do I change this? Or maybe there’s no changing it. Maybe it’s just over. What a terribly sad thought that is.”

I reach out for Clair’s hand. “I am touched by the loving depiction of the intimate life you’ve had with your husband over the years. It can’t be easy for either of you to see this wind down. However, the closeness and tenderness you’ve had throughout your marriage need not stop now.eldery hands

May I ask; do you still sleep together in the same bed? Would you be comfortable initiating a little cuddling with Charley? Good! Then I’m going to suggest a regiment of spoon breathing and guided-hand touch that I’m sure will work for you both. You will, of course, need to take the lead role in this since, as you say, Charley no longer knows how to touch you, but once he gets the hang of it and he has your permission to do so, he can continue even when you’re not able to reciprocate or even respond.

Allow me to quickly explain spoon breathing. Here’s what you do; lay on your side with Charley on his side close behind you like two spoons. Then see if you can match one another’s breathing pattern. You will be amazed at how calming and comforting this will be for you both. It will also be a very effective way to reestablish a threshold for what is possible between the two of you now, in this final stage of your life.

Now the guided-hand touch; take his open hand in yours and guide it to where you like to be touched. Show him how you like to be touched where he is touching you. Long strokes, slow strokes, short strokes, soft strokes, or just having his hand rest on you, whatever. Show him the kind of pressure you are comfortable with where he is touching you. Once you’ve established a simple routine of breathing and touching, give Charley permission to carry on even if you happen to fall asleep. Because this breathing and touching technique is so gentle and loving, it should be able to serve you even as you are actively dying. But you’ll have to let Charley know that this is what you want and need. You could tell him that you want to die in his arms. What an ideal way to bring your life together to a close. Do you think Charley will accept your invitation?”

“I can’t say for sure, but I think if I suggested it to him in a way that lets him know that he would be doing it for me, it might work. But I’m not sure about what I should say.”

everyone dies“When words fail to communicate what is in your heart, you can always rely on touch. Maybe you will find that nothing needs to be said at all, Clare. Draw him close and keep him near you with touch. Something tells me Charley will find this irresistible. It could be the fondest of farewells. Something he’ll never forget.

This is my philosophy. Each of us is entitled to intimacy and pleasure in our life, regardless of how our body looks or at what stage of life we are at. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.”

With a little help from my friends

“I was just sitting here thinking about what would be on my mind if I were in your place, facing my imminent death. I suppose I would be thinking about immortality, not in any conventional sense of that word, but more in terms of my legacy. I guess I’m really self-conscious, or maybe it’s vanity, I don’t know, but I think I’d be wondering about my contribution to this wounded world.”

My good friend Kim called me out of the blue. She asked if I would be available to consult with a couple of her friends, James and Rebecca. James is dying.

I didn’t know Rebecca or James personally, but I had heard a lot about them from my friend Kim. I talked to Rebecca briefly by phone and accepted an invitation to visit with them the very next day. When I arrived at their home, I found James very close to death. The scene was calm and, at first glance, everything seemed to be in order, but the tranquility was deceptive.

challenges aheadRebecca began by telling me that she thought something was wrong. “What do you mean, wrong?” I asked.

“I don’t know. I can’t put my finger on it exactly. James has been actively dying for weeks. Why is it taking so long? We’ve prepared for the end in the best way that each of us knows how, both psychologically and physically. Everyone has been extremely helpful. Hospice has been wonderful. But we never thought it would turn out to be such a marathon. We’ve been waiting and waiting for what seems like forever for the end but it doesn’t happen.”

She went on to say, “Don’t misunderstand, I’m not impatient for James to die, but there’s something unnerving about all of this that has us both on edge. It’s like standing at the airport fully packed for a long trip waiting to board a flight that never arrives. It’s been exhausting for the both of us. I can’t help but think we’ve overlooked something. I’ve quizzed James about it, but he doesn’t know what it could be either. That’s when Kim suggested we talk to you. We’re both afraid that our impatience and anxiety is going to disrupt the tranquility we’ve worked so hard to achieve. Can you help us?”

James confirmed what Rebecca told me. “Look at me! There’s nothing left that works, I can barely see anymore. It’s pathetic. I should have been dead by now. Even my hospice people are surprised that I’m lingering. I think I’ve been extremely patient so far, but this is ridiculous. I want this to be over, damnit. I don’t know how much more of this I can take.”

There was a blockage, no doubt about it. I could feel it all around me. Had they overlooked something important? I thought I’d better try and find out.

“James, is there anything left undone? Did your restaurant sell?”solutions

“Yeah, months ago. I’m satisfied that we’ve taken care of every last legal detail. I’ve even had two different lawyers sign off on the deal.”

“How about family; any unfinished business there?

“No, my parents are here, sisters and brothers have all been through here at one time or another. I’m feeling real good about all of my relationships.”

I was stumped. They appeared to have thought of everything. Nothing seemed out of place. So why did we all feel on edge? We sat quietly for a while and then I said, “You know, James, maybe it’s something metaphysical.”

“You mean like God and heaven and that sort of thing?”

“Yeah, in a roundabout sort of way. I was just sitting here thinking about what would be on my mind if I were in your place, facing my imminent death. I suppose I would be thinking about immortality, not in any conventional sense of that word, but more in terms of my legacy. I guess I’m really self-conscious, or maybe it’s vanity, I don’t know, but I think I’d be wondering about my contribution to this wounded world. Since I think about this a lot and I’m not sick, I’m sure that I’d be concerned about it as I lay dying. We’re not such different people, you and I. Do you ever wonder about the impact you’ve had on your world? Is any of this even making any sense?”

Silence. Then tears pooled in his eyes.

“You know, I’ve been a foodie all my life. When I moved to the Bay Area thirty years plus ago it was because it’s the center of the food world. All the world’s greatest cuisines come together here. It’s the culinary Mecca. This town really appreciates the creativity and art involved in cooking. I’ve had the good fortune to work with the best chefs in the world and, in turn, they’ve shared my table. I was good; I mean I was real good. And now that I’m dying, no one has asked me for my recipes. Was it all for nothing?”

I get by with a Little help from my friendsWe were all stunned by what we were hearing. Rebecca spoke first.

“Sweetheart, your friends would never think to ask you for your recipes. They all secretly covet them, of course, but asking for them would be out of the question. It would be kind of ghoulish, don’t you think? Like vultures hovering, waiting to pick over a carcass. And you have to admit that you haven’t been particularly forthcoming about any of this yourself.”

“Yeah, I know, but I’m dying. It’s different now. It’s my legacy, just like Richard said.”

Two days later a simple but elegant ritual had been prepared. Champagne was chilled, a couple of friends were called, and James directed Rebecca to fetch his treasure. Choking back tears of gratitude, he blessed us all.

“Thanks for making this such a great ride, you guys.”

As he said this, he handed each of us a memory stick, which held the booty. James entrusted us with his cookbook manuscript in the hopes that we would have it published after his death. He insisted that the title be: Food to Die For. We promised that we would do our best and thanked him for his trust and friendship.

I guess that took care of that, because seven hours later James was dead.