For Dr Kate Granger, preparing for a ‘good’ death has allowed her to accept her diagnosis of incurable cancer
Kate and her husband Chris at the renewal of their wedding vows
“Facing death is not something anybody ever wants to contemplate. But that is exactly what I’ve had to do for the past five years. At the age of 29 I had the perfect life. Happily married, successful career, great network of friends and family, beautiful home and in the early stages of planning to conceive our first child. My life was all I’d ever dreamed it would be. But all that was shattered into minuscule pieces when the cancer sledge hammer hit us, and we discovered my incurable diagnosis; a diagnosis that came completely out of the blue and destroyed our lives as we knew them.
As a doctor specialising in the care of older people I had some familiarity with dying. I’d sat and held the hands of patients as they drew their final breaths. I’d comforted families through difficult conversations around end of life care for their loved ones and their eventual bereavement. But now it was my own mortality that had come into a sharp, unavoidable reality.
The cancer was very aggressive and advanced; my kidneys had failed; I was in intractable pain. There really was no hope of cure no matter how optimistic your view. As a clinician I didn’t know any way to get through something so life changing, other than addressing it head on. Within days of discovering I had bone and liver metastases, I had made the decision that I did not want to undergo cardiopulmonary resuscitation. I wrote my Bucket List. I made a will. I started work on a memory box for Chris. I specified my end of life care preferences in writing. Attending to these practical considerations gave me a peace of mind that allowed us to accept what was happening, and then move on with living in the present with a degree of calmness.
Thoughts about death often creep into my consciousness though. I wonder about what it will feel like, what symptoms I might experience and I reflect frequently on my personal vision of a peaceful, ‘good’ death. I’ve picked out my favourite music, particular candles with soothing scents and the books I’d like my Mum to read to me. I desperately want to die at home, surrounded by the people who love me. These preparations are designed to create an environment with comforting childhood memories, making me feel as safe as I can despite the horrendous circumstances.
However given my professional experience I know only too well that I may not achieve my serene death ambitions. I know that my symptoms may become uncontrollable at home, especially if I develop a bowel obstruction. I fear being bundled into an ambulance and carted off to hospital. I fear my eventual loss of independence. I fear not being strong enough to see it through to the end.
I have been extremely publicly transparent about my health problems by writing books and using social media. Looking back I think this is thanks to my inner teacher; I want to share my experiences to improve care for other patients. I felt so useless and lacking in purpose at the beginning of my illness. Getting my laptop out to write the whole sorry saga down seemed a natural response. I needed to process what I was going through and I wanted to emphasise how healthcare professionals’ behaviour impacts the people they look after. This project has now gone one step further, and I plan to share the end of my life on Twitter using the hashtag #deathbedlive. Unexpectedly I now have a huge social media following, and I hope one of my final legacies will be to promote a national conversation in society around death and dying by using this powerful voice.
I’m one of the lucky ones. I genuinely believe that. I have the support of an amazing husband, who has been there for me every single step of the way. He has made our lives truly incredible and I never know what the next lovely surprise might be. We are able to live comfortably in our own skins, with the lurking existence of the death gremlin, because we are honest and open with each other. Talking about death is never going to be an easy task, but Chris knows my wishes and I am absolutely sure that he will protect them right up until the end.
Palliative care is still widely misunderstood by many Canadians. Here are 10 common myths we often encounter. Help dispel these myths by sharing the facts with family members and friends, colleagues, patients and client.
1. Myth: Palliative care hastens death. Fact: Palliative care does not hasten death. It provides comfort and the best quality of life from diagnosis of an advanced illness until end of life. See also:Palliative Care: Dispel the myth of hastening death
2. Myth: Palliative care is only for people dying of cancer. Fact: Palliative care can benefit patients and their families from the time of diagnosis of any illness that may shorten life. See also:How do you know when someone is ready for palliative care?
3. Myth: People in palliative care who stop eating die of starvation. Fact: People with advanced illnesses don’t experience hunger or thirst as healthy people do. People who stop eating die of their illness, not starvation. See also:Can you provide some guidance about oral nutrition at the end of life?
4. Myth: Palliative care is only provided in a hospital. Fact: Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice or hospital. See also:What is Palliative Care?
5. Myth: We need to protect children from being exposed to death and dying. Fact: Allowing children to talk about death and dying can help them develop healthy attitudes that can benefit them as adults. Like adults, children also need time to say goodbye to people who are important to them. See also: Don’t Use the ‘D’ Word: Exploring Myths about Children and Death
6. Myth: Pain is a part of dying. Fact: Pain is not always a part of dying. If pain is experienced near end of life, there are many ways it can be alleviated. See also: Pain
7. Myth: Taking pain medications in palliative care leads to addiction. Fact: Keeping people comfortable often requires increased doses of pain medication. This is a result of tolerance to medication as the body adjusts, not addiction. See also: Pain medication myths: Addiction and hastened death
8. Myth: Morphine is administered to hasten death. Fact: Appropriate doses of morphine keep patients comfortable but do not hasten death. See also:Does morphine make death come sooner?
9. Myth: Palliative care means my doctor has given up and there is no hope for me. Fact: Palliative care ensures the best quality of life for those who have been diagnosed with an advanced illness. Hope becomes less about cure and more about living life as fully as possible. See also:Health Care Decisions: An Approach to Decision Making and Advance Care Planning
10. Myth: I’ve let my family member down because he/she didn’t die at home. Fact: Sometimes the needs of the patient exceed what can be provided at home despite best efforts. Ensuring that the best care is delivered, regardless of setting, is not a failure.
Everyone should ask themselves, “How do I want to die?”
BY MARK FOURRE
As doctors, we are trained to solve problems.
If an arm is broken, we set it. If a heart valve is leaking, we replace it. If infection strikes, we do our best to cure it. There is real satisfaction when, as physicians, we make an accurate diagnosis and deploy an effective treatment.
Perhaps that’s why, when there is no problem to be solved, we don’t always do our best work. Death, after all, is not a solvable problem. All our patients will die. We can’t fix that. And too often, as a result, we don’t do all we should, or could to help our patients accept the inevitable.
Physicians are not alone, of course. Our society generally does a poor job of seeing death as a natural outcome of life. Many of us maintain the myth of our own invincibility long past our 20s. And where death was once something that typically happened at home in the presence of family and friends, it more often happens today in a hospital or nursing home.
When confronted with the question, “How do you want to die?” many of us might answer “I don’t.” But this question, the kind of death we want for ourselves, lives with us every day of our lives. It is true that extending life is a desirable and legitimate goal of our healthcare system, but the quality of our lives — and of our deaths — have a place as well.
None of us can solve death as if it’s a problem, but we can all have goals for the end of our lives. And it is that change, from problem-solving to goal-setting, which can lead us as physicians to do better by our patients when it comes to end-of-life care.
Of course, better end-of life-care, like better health overall, is not just the doctor’s responsibility. Just as everyone needs to do their part in the work of extending and improving life by not smoking, exercising and eating a healthy diet, so, too, must our patients take an active and informed role in good end-of-life planning.
The rewards can be a bit counter-intuitive. Research shows that among those who are given a terminal diagnosis, having an end-of-life plan that includes goal-directed care like hospice leads to care that is not only less costly, but patients on average are happier and actually live longer than those who exhaust every treatment option.
The good news is members of the medical community are beginning to embrace these changes. Across the MaineHealth system, for instance, events were planned around National Healthcare Decisions Day on April 16, organized to raise awareness of better end-of-life planning. And every day the conversation is growing among doctors, nurses and other practitioners about the need to talk to our patients about the benefits of creating advanced directives for healthcare and thoughtful end-of-life options such as hospice care.
For all this good work, though, the most important lessons I learned about death and dying didn’t come as part of my medical training. They came from my parents.
During my internship year, my dad as a relatively young man in his late 50s, had to struggle with the decision of whether to undergo chemotherapy for advanced lung cancer. He decided that his goal was not to pursue more days alive, but rather, to live the rest of his life meaningfully.
He chose to forgo chemotherapy and identified the goals he wanted to meet before dying. He completed the design of a church he was working on. He deliberately and intimately connected with family and friends. He put his financial affairs in order. He even planned his entire visitation service and funeral, including designing the memorial card handed out at his wake.
Importantly, he didn’t do this alone. He had to talk with a lot of people. Everyone important to him knew the plan. His family, his doctor, his business associates and his close friends all understood what to expect. And we all knew that my dad was living the way he always had, in a thoughtful and loving manner.
And, he spent time conversing with his God. “I don’t have a problem with dying,” he would say. “I’m just not sure I agree with the timing.”
My father was able to have the kind of death he wanted because he thought about it beforehand and took steps to insure that he died the way he had always lived.
Years later, my mother died from Parkinson’s disease. I am grateful to this day for the afternoon she spent with me not long after her diagnosis putting her thoughts down into a medical directive that would guide my family through the end stages of that illness. It was a natural and rewarding conversation in part because we didn’t set out to produce a perfect document, just one that would work for my mom and our family.
As a doctor, I have seen the alternatives to these thoughtful deaths.
I remember the first time I responded to a code in the hospital. I was a young medical student. A “code” or “code blue” is called over the intercom system of a hospital when a patient has had an unexpected cardiac arrest.
Amongst all the commotion, the thing that stood out the most to me was the patient. She was very frail, very old — and lifeless. The whole scene struck me as too much. It felt invasive and out of place.
Despite the apparent futility of the efforts, the “code” continued for what seemed to be a very long time. As is the case with the vast majority of “code blues,” the effort was not successful.
There is a reason why 65 percent of older physicians have an advanced directive, compared to 20 percent of the population generally. We know the limits of modern medicine. As a result, we know how we would like to die.
As physicians we must resolve to build end-of-life conversations into the care of all our patients. The time to start the conversation is long before a terminal diagnosis. And as with smoking cessation, progress will depend not on one conversation but instead on an ongoing dialogue.
If you are a patient and your doctor hasn’t brought up end-of-life care, don’t be shy. Ask. The time to start is now, and it is a conversation that should include not only your doctor, but all those close to you.
As an integral and inevitable part of life, death is not a problem. But our failure to plan for it is. Let’s solve it, together.
Software developer Pieter Hintjens outlines his rules for talking to someone who is dying, as he faces up to his own diagnosis of terminal cancer
Software developer Pieter Hintjens has been diagnosed with terminal cancer at the age of 53. He will be opting to end his own suffering through euthanasia, which has been legal in Belgium since 2002. He has three children, aged twelve, nine and five. In a final article on his website, he has outlined a protocol for dying, including these thoughts on how to have a conversation with someone you know is going to die.
It can be horribly awkward to talk to a dying person (let’s say “Bob”). Here are the main things the other person (let’s say “Alice”) should not say to Bob:
“Hang in there! You must have hope, you must fight!” It’s safe to assume that Bob is fighting as hard as possible. And if not, that’s entirely Bob’s choice.
“This is so tragic, I’m so sad, please don’t die!” Which my daughter said to me one time. I explained softly that you cannot argue with facts. Death is not an opinion. Being angry or sad at facts is a waste of time.
“You can beat this! You never know!” Which is Alice expressing her hope. False hope is not a medicine. A good chemotherapy drug, or a relaxing painkiller, that’smedicine.
“There’s this alternative cure people are talking about,” Which gets the ban hammer from me, and happily I only got a few of those. Even if there was a miracle cure, the cost and stress (to others) of seeking it is such a selfish and disproportionate act. With, as we know, lottery-style chances of success. We live, we die.
“Read this chapter in the Bible, it’ll help you.” Which is both rude and offensive, as well as being clumsy and arrogant. If Bob wants religious advice he’ll speak to his priest. And if not, just do not go there. It’s another ban hammer offence.
Engage in slow questioning. This is passive-predatory, asking Bob to respond over and over to small, silly things like “did I wake you?” Bob is unlikely to be a mood for idle chitchat. He either wants people close to him, physically, or interesting stuff.
Above all, do not call and then cry on the phone. If you feel weepy, cut the phone, wait ten minutes, then call back. Tears are fine, yet for Bob, the threat of self-pity looms darker than anything. I’ve learned to master my emotions yet most Bobs will be vulnerable.
Stories of old adventures they had together. Remember that time? Oh boy, yes I do… it was awesome!
Clinical details. Bob, stuck in his bed, is probably obsessed by the rituals of care, the staff, the medicines, and above all, his disease. I’ll come to Bob’s duty to share, in a second.
Helping Bob with technical details. Sorting out a life is complex and needs many hands and minds.
“I bought your book,” assuming Bob is an author like me. It may be flattery, or sincere, either way it’ll make Bob smile.
Above all, express no emotions except happiness, and don’t give Bob new things to deal with.
It’s not all Alice’s work. Bob too has obligations under this protocol. They are, at least:
Be happy. This may sound trite yet it’s essential. If you are going to be gloomy and depressed, Alice will be miserable every time she talks to you.
Obviously, put your affairs in order. I’ve been expecting death for years now, so had been making myself disposable wherever I could. For family, that is not possible. For work, yes.
Remove all stress and cost that you can. For example Belgium permits euthanasia. I’ve already asked my doctors to prepare for that. (Not yet!, when it’s time…) I’ve asked people to come say goodbye before I die, not after. No funeral. I’ll give my remains to the university here, if they want them.
Be realistic. Hope is not medicine, as I explained. If you are going to negotiate with your doctors, let it be pragmatic and in everyone’s interests. I’ve told mine they can try whatever experimental chemotherapy they wish to. It’s data for them, and the least I can do for a system that’s given me five+ years of extra life.
Assume the brutal worst. When my oncologist saw my scan she immediately called me and told me, in her opinion, it was cancer. In both lungs, all over the place. I put the phone down, and told the children. The next day I told their schools to expect the worst, then my lawyer, then my notary. Ten days later the biopsies confirmed it. That gave us ten more days of grieving and time to prepare.
Be honest and transparent with others. It takes time to grieve and it is far easier to process Bob’s death when you can talk about it with Bob.
Hospice nurse Jen Moss admires the spirit of patient Jody Wooton
Jen, 41, did not set out to become a hospice nurse, but she feels compelled by a tragic past
Jody, 64, is one of a growing number choosing to die on their terms
On Sept. 24, Jen Moss (right) took Jody Wooton to Kauffman Stadium, where they cheered as the Royals beat the Seattle Mariners 10-4 to clinch the American League Central Division on their way to winning the World Series. Both kept a copy of this photo.
BY ERIC ADLER
Jen Moss took to Jody Wooton from the first moment they met.
Jen, 41, the hospice nurse. Jody, her irreverent patient, all but spitting in the eyes of her doctors.
‘Refuse treatment and you won’t live two months,’” Jody remembers one doctor chiding her. Jody, 64 and with a wilting heart patched together with a quilt of 11 stents, glared back at him through rectangular glasses.
“Only two months? I usually get four, you know!”
Jen, whose own life has been touched by violent death in ways few have experienced, so wants to give Jody the good and peaceful death she deserves.
Jen admires her spunk, seeing behind what even Jody’s family recognizes is a sometimes cantankerous cover.
The way Jody sees it: hell if she is going to take more of that “crap,” as she puts it, from some pissant physician who felt it was his duty to pump her full of meds and IV fluids until her body bloated and her fingers swelled like blood sausage. It had happened before.
“Couldn’t wear my clothes,” Jody complains.
Three times over a decade, doctors said she might die from her bad heart. In March 2015, she actually did, but doctors jolted her back.
When she woke in recovery, oxygen and IV lines crisscrossing her body, she excoriated hospital workers.
“I said, ‘What the F are you doing?’ I had a DNR!” — a do-not-resuscitate order. But the hospital couldn’t find its copy, so the doctors brought her back to life.
After that, she was fed up.
“Wouldn’t back down for anything or anybody,” says Jody’s brother, John Kerby, 54 and a trooper with the Kansas Highway Patrol. “Everybody was a friend, unless you gave her reason not to be.”
So that was it. Call hospice, Jody told her sister. Jody was already widowed, terminally ill, no kids.
“I will be here as long as I’m supposed to be here,” she says now. “Nobody is going to tell me that I have to do this right now, or that right now.”
She will die on her terms.
“If I’m doing this,” Jody says, “I’m doing it my way.”
It’s a choice that ever more people are making in the United States. From a handful of nonprofit programs in the 1970s, hospice care has exploded to more than 6,100 programs, most of them for-profit today. Hospice now is a $15 billion a year industry.
Of the 2.6 million Americans each year who die, almost half, 1.2 million, die in hospice care. Their family members can take some semblance of peace knowing they died not alone in a hospital, but among loved ones in the place they saw as home.
Jen works at Kansas City Hospice & Palliative Care, which was one of the first hospices in the area when it opened in 1980 with two nurses and 13 patients.
Today the nonprofit employs 177 nurses, along with chaplains, social workers, counselors and nurse aides, who care for some 2,300 patients a year. There’s Jen’s “blue” team for home care, a “red” team for nursing homes, a “gold” team for both and a “carousel” team for terminally ill children.
The program is only one inside a crowded field of nearly 40 Kansas City area hospices. Elaine McIntosh, president of Kansas City Hospice, calls it “one of the most competitive areas in the country.”
Job chooses Jen
Neither Jody nor Jen anticipated the connection they’d find in hospice.
On a chilly morning in February, the nurse, just over 5 feet tall and with a tumble of shoulder-length black hair, rolls her silver Ford Fusion to a stop across the street from Jody’s home in the Overland Towers Apartments, an eight-story complex for senior citizens at 86th and Farley streets in Overland Park.
She gathers her belongings, grabs her stethoscope and checks her satchel, which contains a tablet computer with the names and medical records of Jen’s 13 patients: another woman, 64, dying of congestive heart failure; a 66-year-old man with Alzheimer’s; a father of three children, age 60, with bone cancer.
Among the patients she will see later: Al Jensen, a 90-year-old Navy veteran of the Normandy invasion who until recently has been as healthy as a war horse. His goal was to live 10 to 20 more years, but that was before doctors discovered more than a dozen cancerous tumors riddling his insides.
“Morning,” Jen says cheerily as she enters the Overland Towers lobby. A smattering of residents with canes or walkers smile and wave from their chairs.
Truth be known, as a self-described optimist and mother of three lively sons, Jen never in her wildest imaginings thought she’d be doing this job.
When she started her nursing career, it was in a hospital’s orthopedic/neurological unit, followed by neonatal intensive care. She moved to a dermatology practice and had a friend who’d become a hospice nurse. Jen recalled thinking, “Who in their right mind would choose to be surrounded by dying people every day?”
At Rockhurst University, one of Jen’s nursing professors spoke glowingly about it.
“My God,” Jen remembers thinking, “that sounds awful.”
But after two years with Kansas City Hospice & Palliative Care, she has come to experience the job’s grace, along with the deep, even spiritual satisfaction that accompanies her connection to patients and their families at one of the most difficult moments in their lives.
More, Jen wonders whether this is what her grandmother was talking about when she assured Jen, especially in her darkest moments, that “God has a plan for you.”
“Sometimes you don’t choose a job,” Jen says. “It chooses you.”
Who better to choose than someone like Jen, with a tragic past few could fathom?
“My sister says I should have been on the Oprah show,” she says. “My whole life has been dramatic, surrounded by death. My life has led me up to this job.”
Living around death
If divine or cosmic plans exist, Jen would argue that hers was set in motion months before she was born. That’s when her biological father, at age 23, died in a car wreck. Her mother, married at age 18, was just 19 and three months pregnant with Jen. Now she was a teenage widow.
Years later, as Jen herself was turning 19 — a year after her graduation from Park Hill High School — she also became pregnant and in 1994 had Neil, the first of her sons. Becoming a nurse had been a lifelong goal, “but college went by the wayside,” Jen says.
Instead, as a single mom, she worked for years as a waitress and bartender on the County Club Plaza, where she fell in love with Eduardo Gonzalez, a handsome dishwasher from Mexico.
They married in Las Vegas. They had a son, Frankie, in 2000. The family of four was happy.
Until, on a September night in 2002, Eduardo went out with his brother. Jen had an ill feeling.
“That night I knew. I just knew,” she says. “I’m like, ‘Don’t go. Don’t go.’ He’s saying, ‘Why not?’”
The call later broke the night’s silence: Come quickly to St. Luke’s Hospital. There had been a fight and, as Eduardo ran to protect his brother, a gunshot. Jen burst through the emergency room doors and was given word.
“I heard screaming,” Jen recalls. It filled her head but seemed far off. The voice was hers, echoing in her ears as she disassociated from the tragedy. “The next thing I know, I’m against the wall on the floor.”
Jen was 28, widowed with two children. Family and friends gathered around her, including her cousin, Tony Rios, who was Jen’s age, and Olivia Raya, Tony’s 26-year-old girlfriend, who was soon to graduate from Rockhurst University. It was Olivia who had been urging Jen to fulfill her dream: Go back to college. Become a nurse.
Then, three months later and days before Christmas, Jen had a dream. It was beautiful.
“I’m sleeping,” Jen says. “It’s like a white light, and we’re like spinning in a circle: me, Tony and Olivia. And they’re telling me that they’re OK, everything is going to be OK. It was just this overwhelming calm. I was like, ‘Oh my God, I have to call him.’”
The next morning, a call came her way.
Tony and Olivia were dead, slain in their Kansas City home in a robbery/drug deal. Olivia, who had just graduated from Rockhurst, had been writing thank-you notes when it happened.
Jen loved her wayward cousin deeply. She had been aware that he dabbled in drugs but had no idea how seriously deep it had become.
Still grieving after the murders, she entered nursing school, where she would hear the professor talk about hospice. Married again in 2009 — to Micky Moss, a Sprint engineer, and after having a third son, Everett — she thought she had something to give.
Jen knew grief and the complications of families. Having experienced violence in life, having seen how impersonal and undignified death could be, she thought maybe she could turn it into something more graceful.
Stories of intimate connections with death are hardly uncommon among those who choose to become hospice workers. Nurse Julie Griggs, 59, who trained Jen, came to hospice 12 years ago after spending 12 years treating patients in hospitals, where she thought so much of care, including death, had turned too clinically rote and impersonal.
Like Jen, colleague and social worker Crispian Paul, 37, had also experienced tragedy, the death of her 16-year-old sister in a wreck when Crispian was 12. Her mother later died of domestic violence. Crispian wanted to help others, possessing what she calls “a comfort level” with dying.
So it is with Jen.
“I do feel like because I have had a lot of loss and have lost a spouse — I don’t know exactly what all families are going through — but I know I can offer them some empathy, and some support and just” — Jen pauses before continuing — “some kindness.
“I mean, I get so much out of it as well. I meet all these families. You know, they’re trusting me with this, this such special, horrible time in their lives. I feel like I can help support them.”
Caring, not curing
At Overland Towers, the elevator carries Jen to the seventh floor. She turns right to Room 707, with the name JODY spelled out in purple, Jody’s favorite color. Black and white stickers of puppy paw prints run up and down the door.
“Jody loves animals,” Jen says.
Cats. Dogs. A ferret. Years back, Jody volunteered for a pet rescue group. Sometimes she had six or seven dogs, plus cats, before she moved to the towers.
Jen, to be sure, can’t precisely predict how much time Jody has to live.
“I’ve see her declining quite a bit in the last three months,” Jen says. “She possibly had a heart attack, a mild one, three weeks or a month ago.”
But there is no going to the hospital. That’s not how hospice works.
“I treat her pain,” Jen says.
As common as hospice has become, workers, indeed, still find it necessary to educate people on exactly how it works.
A common mistake is to link hospice care to euthanasia or physician-assisted suicide. The notion that hospice workers give patients medications to hasten their deaths is utterly wrong.
Instead, the essence of hospice is caring for patients as they move toward the end of life, in peace and with minimal pain. As the National Hospice and Palliative Care Organization puts it, hospice is about “caring” for one on the journey toward death, as opposed to “curing.”
To be eligible for hospice care, a person must be judged by a physician to be terminally ill and — making the choice to no longer seek curative treatments — likely to die in the next six months. Ninety percent do. Half of hospice patients in 2014 died within two weeks.
Jody is rare. She has been on hospice for a year, which is allowed if regular medical evaluations find the patient’s health has continued to decline in a way that makes death likely, and soon.
Once someone is on hospice, Medicare, Medicaid or private health insurance picks up the tab. Hospice patients receive a host of services including regular nursing care, prescriptions for pain and comfort, a hospital bed, a wheelchair, oxygen, help with bathing, social work and chaplaincy services.
In general, there’s no rushing to an emergency room for curative care.
“Medicare won’t cover any hospitalization,” Jen says. “They won’t cover any treatments. No diagnostics. If you’re on hospice, they’re paying for hospice.”
You can change your mind. People do revoke hospice. Some even rally and improve enough to go off hospice, then come back if they again decline. Some people on hospice choose to be resuscitated, wanting to eke out every minute of life possible, even when they are terminal.
“It’s their choice. We respect it,” Jen says.
But Jody, with her DNR order, does not want that. She is not getting better. She and Jen feel lucky that the year they’ve shared has allowed them to bond.
Similarly, Suzanne Fuller, 41, has bonded with Jody as her bath aide.
One of Jody’s problems, diabetes, caused her to lose the bottom half of her left leg. Sometimes Suzanne accidentally will step on her prosthetic foot.
“Ouch!” Jody will yelp, then, “just kidding.”
Big heart, big personality, no complaints. They laugh and laugh. Jen feels the same.
“I’m really going to miss her when she goes,” Jen says.
She knocks on the apartment door and calls out.
“Jody? It’s Jen.”
No answer.
“Jody?” she repeats, her voice a bit more concerned.
Silence still. Jen turns the knob. The door, unlocked, opens.
No sound from the other side, and Jen calls once more.
“Hello?”
Monday: For her own dignity and peace, Jody prays her death will be quick, no bother to anyone.
Hollywood film industry producers or directors in a sound stage
We’re better at welcoming new life into this world than we are at saying goodbye. But some point we all end up on the off ramp, regardless of whether we choose to realize it.
But before we hit the exit, there are a few important things to consider: the body, the obituary, the service, and the afterparty. And my father-in-law, Hank, taught all of us how it’s done.
Hank died last January at 92. In December, two doctors declined to operate on his leaky heart valve. They didn’t think he’d survive. So we had a wistful but wonderful Christmas with him as he furniture-walked around the house, grabbing at table and counter tops with labored breathing until he finally settled in on the TV room couch.
Fortunately for all of us, Hank was an engineer and a planner. Years earlier we’d received a blue folder filled with notes on what to do in the event of his death.
He sent us these thoughts in the year 2000. He re-sent them in 2008, complete with an addendum from his wife called “When We Drop Dead.”
First was the body. Yale Medical School was supposed to get it. He left us the phone number and a name. This is actually more complicated than it sounds. You have to die in Connecticut. Yale has to receive the body quickly. And you need an authentic death certificate before they’ll take the body away.
Next, the obituary. Hank kindly provided the name and number of the New Haven Register obit section. And The New York Times’. My husband wrote it. That’s hard to do when you’re grieving. If at all possible, might I recommend writing an obituary in advance, when your head is clear and you have time to check the facts.
There are two kinds of obituaries: paid and unpaid. The paid have a just the facts, ma’am format. My husband wrote this long, heart-tugging piece about his dad’s rags-to-riches story of working hard and rising through the ranks until he was head of a manufacturing company. How his dad had never thought of going to college until a friend off-handedly told him, “Hey, you’re pretty smart. You should.” How he trained in World War II to be a dive bomber pilot (a profession in which half the men died). How when he was 13, he watched his own father drop dead of a heart attack while placing a star on top of the Christmas tree.
It was a lovely obituary. It was WAY too long. My husband eventually wrote a shorter, more bloodless, just the facts one for the paid section but it made him sad. His dad had been a prominent local philanthropist in New Haven. He’d given to hospitals, universities and schools.
Onto the service. I’m a comedian. Twice before he died, Hank asked me to host his memorial service. I said, “But Grandpa, I’ve never emceed a funeral.” He said, “Jane, it’s not a funeral. It’s a celebration of life. I want people to have fun. Tell them how I loved Scott Joplin and Broadway musicals like Oklahoma and South Pacific. How every year we went to the Messiah sing along at Yale because I loved classical music. And keep it to 90 minutes.”
I emceed. His two sons spoke—one at the beginning of the service and one at the end. So did all four grandchildren, who wanted to share stories about the great guy they knew: how he windsurfed until he was 85, let them drive as kids in his beat-up station wagon as they sat in his lap—unbeknownst to Grandma or their parents. Three representatives from his favorite organizations spoke. And two Scott Joplin piano interludes and one soprano singing Handel’s Messiah were woven into the program.
The obit that had been too long? That went into the program. The grandchildren put a copy on every seat.
The New Haven Register sent a reporter and a photographer. So much of New Haven showed up that it became the next day’s front-page story.
It would have been enough. But ever the planner, Hank had one last idea: the after party. At the end of the service, Charlie Salerno and the Clamdiggers their festive red-striped jackets playing Hank’s all-time favorite song, “When The Saints Go Marching In!” He had left us their card—the brass section marched to the stage and led a procession out the hall and directly toward the two bars that he’d drawn in his notes.
Hank was a terrific planner in life. And he did a bang-up job executive producing how we managed the time right after his death. If only he could have done that for others, he’d certainly have found a great second career.
Kathy Pfaffenbach has volunteered at Mercy House of the Southern Tier since it opened. She helps provide comfort and care to terminally ill patients.
Kathy Pfaffenbach can understand how some people don’t want to think about the issue of death and dying.
But three days a week, the 64-year-old Binghamton woman confronts this reality up close and personal as a volunteer at Mercy House of the Southern Tier — the first home for the terminally ill in Broome and Tioga counties.
She considers it a privilege, not a burden. “Death is so private and personal. I feel humbled that (the residents) allow me to become part of their daily lives,” she said.
Pfaffenbach began volunteering the first day the nonprofit community care facility opened in early March. She’s one of more than 200 volunteers — along with three full-time and seven part-time staff members — who staff the Endicott facility 24 hours a day, seven days a week.
One of Mercy House’s core missions is ensuring “nobody dies alone,” and volunteers are essential in fulfilling this mission, said Amy Roma, director of resident care. They cook, they clean and they help residents with personal care. Just as importantly, they sit with residents, providing companionship and caring as the terminally ill reach the end of their lives.
“So far, we’ve had six residents die, and nobody’s died alone,” Roma said, with a touch of pride.
Pfaffenbach started volunteering eight months after retiring as supervisor of emergency services for Catholic Charities of Broome County. In that capacity, she helped provide in emergencies and directed two food pantries that served some 5,000 people each month.
“That was a feel-good job. When you unlocked the building in the morning, you knew you were going to make a difference in someone’s life,” she said.
She found she missed working with people after spending 27 years with the agency and was looking for something to fill her days.
“Retirement’s not what it’s cracked up to be,” she said, with a laugh. “How many times can you clean your house?”
Sitting home gets old fast if you don’t have a purpose to get up in the morning, but Mercy House provided that purpose. “It’s a way for the whole community to embrace a person as they make their next step into eternal life,” Pfaffenbach said.
The facility, which opened after several years of planning and fund raising, is in the former St. Casimir’s Church, at 212 N. McKinley Ave. in Endicott. Modeled on a similar facility in Syracuse, the 10-bed home will serve patients who have been diagnosed in the last months, or weeks, of their lives and can no longer stay in their own homes.
The facility is bright and airy, with a lounge area for residents and their families, and a nondenominational chapel. Staff work to make it as close to home as possible, Roma said, including personal touches. When a resident dies, staff place a rose and prayer card on the bed so friends and family can spend a moment remembering the person.
Organizers call it a leap of faith. The annual cost for Mercy House is about $600,000 a year and will be paid mostly by donations and fundraising.
As a volunteer, Pfaffenbach spends two days a week helping to made breakfast for residents. The third day, she works as a caregiver, doing a variety of jobs. She takes residents to the bathroom,brings them to the dining room or simply sits with a resident. Sometimes they talk; sometimes she just provides quiet comfort.
“Kathy is a great volunteer. You can tell when she comes in that she loves the residents. She’s here for all the right reasons,” Roma said.
Pfaffenbach’s first job at Catholic Charities was working in the pregnancy and foster care program, she said. She saw the beginning of life, and now she’s seeing its end.
The most challenging thing about this work is seeing a relationship end when someone dies, she acknowledged. Residents become part of the fabric of your life, but fabric wears out, she said. Still, it’s always replace it with another thread, Pfaffenbach added quickly
Every time she walks into Mercy House, she feels a sense of peace and tranquility. Some deaths are easy and some are hard, but when you see them as the next step into eternal life, it’s not fearful, she said.
