On death and dying

SN&R’s readers answer our questions about end-of-life choices

“ People in our culture and society like to pretend that death doesn’t occur. We don’t talk about it with our kids, we send our elderly to rest homes where they wait to die; it’s total avoidance.” Vanessa Cameron

“ People in our culture and society like to pretend that death doesn’t occur. We don’t talk about it with our kids, we send our elderly to rest homes where they wait to die; it’s total avoidance.” Vanessa Cameron

The Compassionate Care Alliance of the Greater Sacramento Region is a nonprofit coalition of health-care professionals and community members encouraging dialogue about end-of-life issues. For more information, contact the Center for Healthcare Decisions at (916) 851-2828 or visit www.chcd.org.
Contact the National Hospice and Palliative Care Organization helpline at (800) 658-8898.
Download an advance health care directive for any state at www.caringinfo.org.

Where would you like to be when you die?

I want to die at home surrounded by family and friends. Drinking in the love.

Peggy Bean, 64
retired state worker

If I do not die in a sudden accident of some sort, I would like to die at home.

Jessica Monasterio, 41
analyst, state of California
Elk Grove

At home, for comfort and familiar surroundings.

Lila Fraizer, 83
retired, freelance writer

In my workshop working on repairing/fixing something. Let me go out while being part of the solution, not part of the problem.

Bob Barns, 85
former draftsman, teacher
Nevada City

On a 20 foot wave at Sunset Beach, North Shore Oahu.

Patrick Powers, 65
publicist

Where doesn’t matter as long as it’s not in a hospital or a burning car. Barcelona or Havana would be nice!

Michael Stevenson, 55
artist/graphic designer

I would want to go out on my terms, surrounded by family. It would be nice to choose the date of my demise (paging Dr. Kevorkian!), have family and friends surround my bed and go out peacefully.

Vanessa Cameron, 31
anthropologist

In Oregon where they have legally assisted suicide. My dad got diagnosed with Parkinson’s when I was 18; I’ve always figured I’d inherit one of the degenerative diseases in my family and go out the slow, hideous route. So I’d like to be able to take myself out before that happens.

Jennifer Rutherford, 33
project assistant

There is a hill against the mountains near my parents’ house where I grew up. If I could arrange to hike to the top of that hill, which is where all of our family pets have been buried throughout the years, I would want to die there with that view as the last thing my eyes saw. If there is anything of a god or a heaven, I know I could get to either by that hill.

Brittany Keehn, 28
student and research analyst

Somewhere where physical remains cannot be recovered, but death confirmed (first choice) or where remains can be dealt with by cremation at lowest cost/inconvenience to survivors (second choice). Reason: Physical remains have no importance or value.

Thomas S. Bullock, 79

I think a nice hospice would suffice at the end, because I’d probably need dialysis. In addition, my research indicates that palliative care is better served in hospices than at home, or in a hospital. Dying of old age means needing a place where grandchildren (I have two) and great grandchildren and their parents can come stay in my vacated home while visiting in my last days.

Paul C. Henderson, 64
engineer

I would like to die in my sleep. Not in some cold hospital setting.

Charles Shook

In the middle of a lightning storm.

Kevin Dollarhide, 58
singer-songwriter

Have you ever been close to the death of a loved one where the actual process of dying was peaceful and comforting?

I was present at the death of my mother, she passed away with all her children present, she asked for all of us before she took her last breath.

Jose Jaquez, 67
retired letter carrier

The single most beautiful experience of my life was attending the at-home deathwatch of the husband of a close friend. He was surrounded by his current wife, his two ex-wives, his two sisters, some of his children and a couple of close friends. One of his sisters was a shaman and she was doing her shaman thing. The atmosphere was dense with love—it was palpable. I had to leave at 3 a.m. about four hours before his demise—he gave me a beatific smile as I left.

Name withheld, 53
sales

As I look back on the experience of losing my partner Ron to AIDS 17 years ago, I feel things happened the way they were supposed to happen. Even though it was a very stressful time, as I look back I am very appreciative of the many friends who came out of the woodwork to help. I was also thankful Ron had lifetime healthcare or I probably would still be paying off the debt. It is very expensive to die.

I have signed a power of attorney for healthcare so if I am incapacitated, someone can make decisions for me regarding my health. I recommend this to all. I have told my friends I do not want to be kept on life support just to give me more days. That is not quality. That is not living. I have also told my friends that if I were to get shot and killed, I do not want my killer to receive the death penalty. I am strongly against returning evil for evil.

Gary Miller, 62
school board member

My father went quickly (massive heart attack) at age 66. My mother endured a slow death “living” with progressive supranuclear palsy for five years. She died at age 71. I think my dad got the better deal.

Katherine Ely, 56
retired

Have you been close to a death where the process was distressing or unsettling?

My father was on life support for almost six weeks with no hope of recovery despite a medical directive against it. I had to convince my mother to terminate treatment for him. Yet another reason to avoid hospitals.

Robert Segal, 66
retired state employee
Gold River

“ We tried to have a peaceful passing for my mother when she died from cancer, but it takes too long for the organs to shut down unassisted. One of the last things that I remember her saying was, ‘I wonder how long this will take?’” Anne Daniels

My late ex-mother-in-law had elective hip surgery in the mid-’80s. There were complications and she required a blood transfusion. Unfortunately, the blood was tainted with hepatitis. After she returned home, she complained to her doctors of not feeling well and they told her she was malingering and a hypochondriac. A correct diagnosis took over six months while her pain worsened. At that point it had developed into liver cancer. The doctor re-admitted her to the hospital and once she learned that she had liver cancer, she expressed her wishes to return home to die. The doctor refused and screamed at her, “I don’t let my patients die!” After she refused a feeding tube the doctor elicited the help of her pastor in telling her it was God’s will that she allow it. Being faithful to her pastor, she allowed the feeding tube. Lucky for her she was able to end this medical nightmare when she died three days later.

Judy Hunter, 58
nonprofit program manager

My mother died last summer. She suffered from Alzheimer’s the last five years of her life. The last time that I spoke to her, she told me about how her dog reminded her about the soup that she had cooking on the stove.

“What kind of dog do you have?” I asked.

“He’s got pointy ears,” she replied.

I later found out from my brother that it was a cat and only mom could hear him. Around that time my sister moved her to a luxurious nursing home near Washington, D.C., where she was treated like a queen. She was devout Catholic and the president of a steel workers union. I like to think that she was in purgatory for those last five years.

David Kulczyk
author,
Death in California and California Justice

We tried to have a peaceful passing for my mother when she died from cancer, but it takes too long for the organs to shut down unassisted. One of the last things that I remember her saying was, “I wonder how long this will take?” I did not have an answer. She was on morphine for the pain, but she had to just lie in bed and wait for death to happen. I know that assisted suicide remains illegal, but I think that is very wrong.

Anne Daniels, 58
analyst

My mother died of cancer, 30 days from diagnoses to death. She was so high on pain medication, she barely knew who she was. I was lost somewhere between denial and rage. I had no idea sorrow could be so heavy. I am not afraid to go out in a “blaze of glory” but I am terrified of cancer.

Rick Edwards, 66
business owner/operator

As a nurse, I’ve had a man call an ambulance for his wife after many years of being sick and finally going unconscious. She was a Christian Scientist and had refused medical care all of her life. Once she was unable to make decisions for herself, she was put in the ICU for several weeks until she was able to communicate again. She promptly insisted that we stop helping her and send her home to die. We did so but the husband again called 911 as soon as she was unconscious, so she went back into the hospital again for several weeks until she was able to talk. She insisted again that we let her go home to die. She eventually died in the hospital, even though she wouldn’t have wanted it that way, because her husband wanted “everything done” for her. Hospitals tolerate this because the dead person isn’t going to sue you later, the living are. So it’s more important to please the survivors and give them what they want than it is to follow even the written instructions of someone who is dying.

Kerri Knox
registered nurse

My dad, diagnosed with Parkinson’s about 10 years ago, died very slowly, losing his ability to talk and walk and eventually swallow. He spent roughly the last two years of his life hospitalized, 18 months of which he was in a “rehab” hospital where they were supposed to be trying to get him off of a respirator. This turned out to be impossible, and then the insurance booted him out of the hospital and we had to pay out-of-pocket to keep him in a nursing home. He had a DNR (Do Not Resuscitate), but it did not get obeyed.

Jennifer Rutherford, 33
project assistant

I stood with my father and brother, and watched my mother die in her bed. She had been bedridden for many years from silicone poisoning from a leaking breast implant. Her death was a slow one, her health failing in ways the doctors could not fathom. Her body was basically eating itself from the inside out, slowly, oh so slowly, shutting itself down organ by organ. She finally slipped into a coma and then struggled for hours and hours, thrashing about the bed and moaning in a way that seemed as if she was struggling to say something. Her eyes darted about under her lids and her face was active in its expressions, not passive or peaceful by any means.

K.J. Evans, 55
state analyst

Do you want to make the decisions about your end-of-life health care, or would you prefer your doctor or loved ones take charge?

I would prefer to make the decisions, but if I could not, I’d trust my wife and my children to make good decisions. I would not want to leave decisions in the hands of doctors. However, I would expect doctors to give honest, candid, and accurate input to allow me to make a well-informed decision.

Steve Halpin, 48
computer consultant

Depends on the circumstances, the people around me know my wishes. I personally don’t want extended and costly measures implemented. Basically pull the plug.

Charles Shook

I absolutely want to remain in charge. The medical industry performs miracles every day and I value that we have access to this level of care. But there is also a dark side to the industry that is a money-making machine. People are kept alive needlessly so money can be earned. This invasive care prevents peaceful and timely deaths.

Judy Hunter, 58
nonprofit program manager

I will make the final decision. If comatose I will have my children put my hand on the plug and I will have enough strength to pull it.

Patrick Powers, 65
publicist

In the current health-care system in America, medical professionals can tend to focus on the disease instead of the person with that disease. Do you agree or disagree, especially when it comes to the dying?

Yes, with my mother, who late in life had a ruptured bowel that very nearly killed her. Instead, she was resuscitated and given a colostomy, from which she never really recovered any quality of life, yet she lived on for eight more years.

Bill Pieper, aging baby boomer
novelist,
What You Wish For

My aunt was 80 and not in the best health (had been a smoker, had very bad circulation, some angina, was overweight, etc.). The doctors talked her into bypass surgery and she had a stroke during the operation and woke up paralyzed and blind on her left side. Then she spent eight years in a nursing home with her legs amputated at the knees because of bad circulation. I wouldn’t wish that on my worst enemy! She was not a good candidate for heart surgery and her doctors should have told her so. She may have had another year or two of quality life instead of eight years of hell.

Marcia Winborne-Graven, 70
retired middle manager

My experience is that Western medicine focuses on treating the symptoms, not the cause. This is how they are trained. Some doctors play hardball, by the rules and look at statistics only. This is a shame, in my opinion. I believe if the causes of illnesses were addressed the symptoms would diminish, with the exclusion of the natural process of aging.

Daniel Thomas, 53
executive director of a nonprofit

Medical professionals are loath to talk about it with patients and families, seemingly due to avoiding the appearance of “giving up.” This is sad because people simply don’t understand that when a hospital asks you if you want them to “do everything,” this means that when the time comes, the family will be pushed out the door and the staff will come in with defibrillator and a team to give drugs and do CPR. Instead of the family lovingly holding Grandma’s hand, you have George the 250-pound ex-linebacker breaking Grandma’s ribs doing CPR while the nurse hooks up electricity to jolt her heart back to life and have a breathing tube shoved into her trachea. Not a nice scenario.

Kerri Knox
registered nurse

The science of disease treatments has become a revenue stream for the health industry. Families can go broke on false hopes that treatments will cure the disease.

Michael Stevenson, 55
artist/graphic designer

For the most part I agree, because we have organized our medical system in that way, focusing on more and more specialties. It reflects the complexity of the disease process and quantity of information, but also a more institutionalized and anonymous form of care. There is a movement to improve the caring part of medicine; the advent of palliative care practitioners and the hospice movement both bring hope for a better way that is more patient-centered and holistic.

Kathy Glasmire, 58
associate director, nonprofit organization

“ I will make the final decision. If comatose I will have my children put my hand on the plug and I will have enough strength to pull it.” Patrick Powers

What would be most important to you if you found that you had a month left to live?

If I had a fatal diagnosis, I would sell everything, get as many credit cards as I could, and take off for as long as I could. I would travel the world and take as many chances as I could. The quality of my days would matter most to me, not the quantity. Hopefully, when the pain became unbearable, I would have the means to choose when and where I died without some yahoo telling me I did not have that basic right.

K.J. Evans, 55
state analyst

I would want to be comfortable and be close to family and my Catholic religion.

Name withheld, 79
retired doctor

I would have lots of s*x and lots of sushi!! I don’t think I’d be one of those people that felt the need to complete everything on their bucket list. I wouldn’t want my final 30 days to be all crazed like that. It would just be important to me to let my family and friends know how much I loved them and being a part of their life. I’d spend that time finding the best home and owner for my dog. And of course the s*x and sushi part … and that’s about it!

Sonya Lovine, 44
research officer

Do you think we shield ourselves from death? Do we shield our kids?

Death is a part of life. A funeral in my family is an occasion for us all to be together to celebrate the love we have for the person who has passed, children should not be deprived of that occasion. We need to teach our children about death.

Margaret Morneau, 46
education coordinator
Aging Services of California

Death is something our society fears and demonizes. I see much focus, policies, laws, and money spent on preventing death and prolonging life, and little efforts on quality of life. [Euthanasia] is illegal; it’s unpopular to speak rhetoric of a good death as opposed to a prolonged life. Furthermore the typical step preceding death, old age, seems to be feared even more than death, as well as disrespected.

Kristi Johnson, 32
engineer

I think culturally we have regarded death as Victorians regarded sex: “Yes, we know it exists, we know it has to be done, but dear lord, lets please not discuss it—are we not civilized?!” I think avoiding death is one of the greatest disservices Americans do as a culture, and I think it is because we are all work, work, work. Death is natural and can be beautiful, and should absolutely not be feared so much.

Brittany Keehn, 28
student and research analyst

I have been called a ghoul because of my writings; a guy who loves death. If that were true, I’d hang out at hospitals. I find death fascinating because nobody knows when or how it is going to happen. I believe that my interest in the finality of death started when I was eight years old and an altar boy at St. Anne’s Church in Linwood, Michigan. I lived around the corner from the church, so naturally I was the kid that was called when there was a funeral. Plus, I got a couple of dollars. Usually it was just the priest and I handling the Mass and rites. So at a very young age, I was a regular participant in the Catholic burial ceremony and buried everyone who died in my village between 1966 to 1970. Our priest was an old French-Canadian who loved skiing, hockey, and baseball. We would talk about the Detroit Tigers on our way to the cemetery, as if we were delivering furniture. “Well, let’s bury this guy,” Father Bouget would say as we got out of the car.

David Kulczyk
author,
Death in California and California Justice

People in our culture and society like to pretend that death doesn’t occur. We don’t talk about it with our kids, we send our elderly to rest homes where they wait to die; it’s total avoidance. Other cultures are very accepting of death as a part of life. The Mexicans have Día de los Muertos, a celebration of the dead that involves everyone, including children.

Vanessa Cameron, 31
anthropologist

I think we tend to shield our children from death more so than ourselves. Although I believe that the majority of us are very uncomfortable interfacing with those who are dying.

Anthony Gould, 64
retired, UC Davis

When I was 8 years old, my grandfather had a heart attack in our family kitchen, and was dead when he hit the floor. I was the only one with him. My parents handled it very badly. I was rushed out of the room, not allowed to attend the funeral, and my sister and I were babysat by an aunt while the funeral was going on. I started a fire in her closet. It was quickly put out, but she never liked me afterward. I was never allowed to grieve for my “papaw.” Thirty years went by before I cried. I have never forgiven my parents for the lack of empathy and compassion for an 8-year-old boy. Witnessing my grandfather’s death is my most powerful memory of a death experience.

J.R. McGee, 75
retired prison chaplain

What do you think will happen when you die?

I shall move on to a whole new realm, a spiritual place of joy, good works, and love.

Lila Fraizer, 83
retired, freelance writer

Nothing. I am absolutely positive that after death is exactly like before birth. Death = end of story.

Anne Daniels, 58
analyst

I hope to join in a reunion and return to the “source.”

Kevin Dollarhide, 58
singer-songwriter

On the one hand, the universe will cease to exist because I will not be there to experience it. On the other hand, the world will continue much as before.

Steve Halpin, 48
computer consultant

I see death as some sort of “crossover” to an unknown, but not necessarily a forbidding place/situation. What an adventure! Or perhaps it is that my molecules will “go back where they came from” and be resurrected in parts in some other form: a cloud, a salamander, a cherry blossom? (My preference would be a river otter.)

Bob Barns, 85
former draftsman, teacher
Nevada City

Well, I know one thing for sure—one of the great mysteries in my mind will be answered. I will move out of this body and into the next step of my great adventure.

Daniel Thomas, 53
executive director of a nonprofit

I know that I will leave my body (which is the only thing that dies) and go find another new one and live again.

Marcia Winborne-Graven, 70
retired middle manager

A release of energy into the world.

Paul Anza, 59
accountant