04/23/18

Dying with Dignity: A look at the life of a hospice nurse

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BY ZACK WAJSGRAS

The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.

Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.

Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”

Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.

In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.

“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”

Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.

Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.

For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.

But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.

Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.

Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.

For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.

“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”

But after discovering Hospice of the Piedmont, that process became much easier.

“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”

For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.

Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.

“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”

Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.

“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”

The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”

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03/13/18

I Am Dying From Terminal Cancer.

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Here’s What It’s Taught Me About Living.

Susan, with her hair mostly out from chemo, and her sons Oliver (left) and Nathan (right) at Nathan’s graduation from the National Circus School (background).

By Susan Briscoe

Sparkling bright and eight months pregnant, my French-speaking surgeon in Montreal, Quebec, was perhaps more direct than she would have been in her native language. She’d just removed my uterus and everything else that I could spare from my abdomen, but she was reporting on what she hadn’t been able to remove of the sarcoma that had, in just the weeks waiting for surgery, spread beyond hope in my belly.

“You will die of this,” she told me matter-of-factly.

Chemotherapy, she said, might give me a few more months if it worked, but those chances were small. So, I consider myself pretty fortunate to still be here a year later.

Pre-diagnosis, I had just turned 50 and was extremely fit, healthy and happy. Nobody could keep up with me! I was excited about life. It had occurred to me that, with my family’s excellent longevity genes — and some good luck — I might very well live another 50 years. I was enthused about the 30 years’ worth of creative activities and research projects that I had ambitiously sketched out for myself. Both my sons, also healthy, happy and on-track, had moved out on their own; and after more than 20 years of solo parenting, I was ready for a little more fun. Deeply aware of and grateful for all the privileges that made my wonderfully full life possible, I figured I had had more joy in life than most would ever have.

But I didn’t get the good luck part, so now I am going to die.

And that is okay.

That was the first thing I told my loved ones. My boyfriend. My parents. My two boys. “I have a very bad cancer. I’m not going to be around much longer. It’s okay.”

They looked so hard into my eyes, gripping my hands, tears streaming down their faces, as I told them this. When I got to the “okay” part, they nodded. They knew I meant it. I was okay. It was okay. They were going to be okay.

Susan getting chemo.

These conversations, especially the one with my boys, were the hardest I’ve ever had. The image of my sons sitting at my hospital bedside and simultaneously dropping to their knees in grief is seared into my mind. Yet these conversations were also the most beautiful I’ve ever had. Though it was terrible to bring them so much pain, I have never felt anything like the outpouring of love we shared in those moments. And it wasn’t long ― that same visit, in fact ― before we were also laughing.

So, one of the first things my diagnosis taught me was that, as much as my dying meant tremendous loss, it also meant receiving gifts of unimagined beauty and joy and love, not just for me, but for my loved ones too.

Many people I meet have imagined me in a state of pure devastation and distress at my diagnosis. Loss brings grief; and because grief is painful, like everyone else, I try to avoid it. But the flip side of grief is gratitude for having had whatever is lost to begin with. I have learned that, to a surprising degree, I have a choice about which side to focus on. I could be sad about all I won’t experience in life ― becoming a grandmother is one of the hardest for me ― or I can be grateful for all the gifts, like my wonderful boys, that I was given and fully appreciated. Choosing a state of gratitude has allowed me to remain happy and even joyous in this time. Yes, there is still grief, but the tears are fleeting, and lately rare.

The Death Project is a blog where I journal about my life with terminal cancer. I wanted people to know that dying doesn’t have to be as bad as we fear.

Talking and writing openly about it has enabled my loved ones and I to feel okay. (My son and a dear friend have contributed to my blog, while my boyfriend has a companion blog and has also written about our relationship for HuffPost.)

It is my hope that our writing will help others face death with less fear and anguish. I always want to say, “it’s not the end of the world!” — though, of course, it sort of is.

Humor has also been a huge help. “I can’t lose my mom and the X-Files in the same year!” my son said in mock despair after he was nearing the final episode of his favorite series on Netflix. His girlfriend was aghast, saying “Too soon!” But it wasn’t too soon for the rest of us.

Allowing ourselves to embrace and even delight in the absurdities of life that can bring anything at any moment has lightened our sadness. It’s also a way into difficult conversations. It’s been hard for my boyfriend to talk about his future without me, so I joke about him bringing a date to my funeral. We agree that he should not be swiping through Tinder during the service ― though it would be fun to compare results before and after his eulogy.

Being so open about my terminal diagnosis was easy for me partly because I was able to accept it immediately. And acceptance was possible because all my life I have been thinking about death and making peace with it instead of fearing it. Having to die when I am still full of vitality has never felt unfair to me. Nor is it a surprise. Death was always part of the deal. And I wanted to be ready whenever it came.

The essayist Michel de Montaigne tells of the skeleton guest at celebrations in ancient Egypt, reminding revelers that there is never a time when death cannot visit, invited or not. And I have heard of another people who keep their own caskets by the front door as a reminder of their own mortality. I like the idea of such memento mori, like a discarded tombstone I once brought home during my youth after visiting a graveyard. I can see now how coming to terms with mortality has been worthwhile not just for the chance moment of a dreaded diagnosis: death has also taught me important lessons about how to live.

Death has shown me that when I am living the life I am meant to live, I am giving. When I discovered I would die sooner rather than later, my most urgent concern was that I didn’t have long to give all I had to the world. On a practical level, this meant getting my affairs in order: a lot of work since my will needed updating. Amid that long and tedious process, I wondered how people managed to die suddenly. There was so much to do!

But giving is much more than a list of bequests. I have also given to society through my teaching job, volunteer work and charity. But most importantly, I continue to give of myself. In my personal relationships, this means my affection, my compassion, my friendship and my love. I’ve had to remind my boyfriend that just because I’m the one who’s sick doesn’t mean I can’t still take care of him at times. Since he is jealous of our cat, I try to favor him with the head rubs. I love to give a smile to strangers, knowing many will pass it on. I try not to give unwanted advice to my sons, but I keep failing. And they still won’t dress warmly! There are so many ways to give: a word of encouragement; a compliment; any act of kindness, however small or brief. I want to give as much as possible, and not just to my dear ones but to everyone, to the whole dear world that I have loved so much.

But giving sometimes triggers grief when I know these opportunities are coming to an end. Like the 4:30 a.m. ride to the airport that I offered my younger son when he was nervous about missing his flight for his first professional tour as a circus performer ― the last ride I figured I would ever be able to offer him. Turns out, he slept through the doorbell, through my texts and phone calls, and through his circus partner’s texts and calls. I ended up pounding on his door until I finally managed to rouse a roommate who let me in to find him still soundly sleeping. We both knew it was the last time I would be able to rescue him. Losing his mother means growing up faster than he might have otherwise (though we also both know that in less practical terms I will always be there for him). He’s going to be okay.

I am aware too that my giving will have to switch to receiving as my disease progresses. Learning to ask for and accept help has been the hardest challenge for me, accustomed to being the competent, independent caregiver myself. Trusting others to load the dishwasher properly is still a struggle! But I remind myself that giving others the opportunity to give is also a gift.

I know there can be no regret in a life lived giving in this way. Though I’m not particularly concerned about immortality, I can also see how it resides in this giving: much of what I have given will still be there in the world when I go. That is what lives on. And the most powerful of those gifts, the one that surely never dies, is love.

So how do I live while dying? Ideally, the same way I have lived my life.

Susan on her 50th birthday

Complete Article HERE!

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03/2/18

Stages of Death

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Death is an ultimate cosmic constant. The stages of death herald the conclusion of all vitality in all mortals. Let us delve deeper into understanding the dying process.

 

by Ishani Chatterjee Shukla

“The pale, the cold, and the moony smile
Which the meteor beam of a starless night
Sheds on a lonely and sea-girt isle,
Ere the dawning of morn’s undoubted light,
Is the flame of life so fickle and wan
That flits round our steps till their strength is gone.”

That was Percy Bysshe Shelley on the approach of death. Death has been an object of fantasy and obsession for many a poet and philosopher, whether classic or contemporary. However, the physiological stages that precede and succeed this dire reality are far from the musings of the poetically inclined. The final phases leading up to death can be categorized as emotional and physical. 

Emotional Stages During the Time Leading Up to Death

The emotional stages of dying are experienced by a person when he knows he is dying and is also shared by the people who are very close to the dying person. These emotional stages are also known as stages of grief and include:-

Denial: The dying individual has difficulty in believing that he is so close to death; he refuses to accept that anything could be wrong with him.

Resentment: Once he is convinced of his fate, he feels it is unfair and his frustration finds vent in anger and resentment.

Negotiation: The third stage is where desperation sets in. He tries to bargain with fate, people close to him, his physician, family, friends, etc. to find a cure, whether medical or spiritual, to prolong his life.

Depression: When he realizes that he cannot cheat death, despondency sets in and he begins feeling hopeless. The person suffers from loss of appetite and insomnia.

Resignation or Acceptance: This is the final stage. The person in question gives up all his struggle and accepts his fate and the finality of death.

The signs of approaching death set in about two to four months before death. The person becomes withdrawn and may feel detached from their surroundings. This is a time for introspection for most people and they recall their past to re-evaluate their lives. However, sometimes people suffering terminal illnesses tend to become hyperactive and indulge in their passions and desires. They put the remaining days of their lives in a fast forward mode so as to partake in those activities which they have always wanted to pursue in their lives but never got an opportunity, just like Jack Nicholson and Morgan Freeman did in The Bucket List. 

Signs of death can be classified as close and distant. Close signs are the physical stages that start setting in from a couple of weeks prior to the exact time of death.

Physical Stages of Death

The physical stages are experienced solely by the person who is dying. These can be categorized into the stages at the exact moment of death and the stages that occur some moments after death.

Stages at the Exact Moment:-

  • The heart stops beating
  • The muscles loosen
  • The skin tightens and a grayish pallor sets in
  • The body loses heat and its temperature lowers to about 1.5°F (every hour; the liver retains heat for the longest time after death, based on which the time of death may be established (provided the body is found during that period)
  • The bowels and bladder become devoid of all contents

Stages After About Half-an-Hour:-

  • Terminal appendages such as finger and toe nails, lips, etc., become pale as blood circulation stops
  • The skin, hands and feet turn bluish due to lack of oxygen and blood circulation
  • All the blood of the body gathers at the lowest parts, making them appear darkish purple
  • The eyes begin sinking into the skull
  • The body starts stiffening, due to a phenomenon known as rigor mortis, after around 3-5 hours of death
  • Other than deaths by accident, most of the time, the stages start well in advance for people who are about to die, be it from illness or old age. 

Distant Signs of Death

Distant signs start occurring between three to six months prior to death. These signs may be experienced even when the subject is not suffering any health issues. These signs may include:-

  • Having hiccups while urinating or excreting;
  • Inability to hear the buzzing sound of inner ears when ears are blocked;
  • Drop in normal body temperature;
  • Inability to taste or smell for no apparent reason;
  • Changed likes and dislikes;
  • Repeated dreams symbolizing increasing distance and misdirection.

About a six to eight weeks before death, the person may spend more time sleeping and lazing around. Diminished movement is witnessed, along with signs of disorientation. The person may either have hallucinations, feel paranoid, or he may be washed with a sense of peace and security. As the final stages close in, the person may feel a sudden, short-lived wave of euphoria and energy, the same way as a lamp flickers the brightest before going out. Breathing becomes irregular and then stops altogether.

The family and friends of the deceased person suffer a trauma of loss for a long time, sometimes for throughout their entire lives. Dealing with the death of a loved one, especially, coping with the death of a parent, spouse or sibling can be emotionally taxing and should be dealt with patience and sensitivity. In severe cases, grief counseling and sessions on death management can help ease the pain of dealing with the loss of a dear one.

Death is the greatest truth, even greater than life itself! There is no assurance of the fetus getting born even after being conceived in the womb, but there is the stoic assurance of encountering death even as the faintest pulse of life starts throbbing. It is not the end but a transition to the afterlife, the beginning of a new journey towards further education and enlightenment of the soul; and we all know that the soul is immortal. Death only marks the end of one aspect of our journey as the soul transcends to a higher realm of consciousness.

Complete Article HERE!

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02/1/18

Death Brings Wisdom to Dying Patients

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By Mary Elizabeth Dallas

With terminal illness comes newfound, and profound, wisdom, researchers report.

They uncovered this silver lining of terminal illness as people in their final months tried to strike a balance between accepting their fate and making the most of the time they had left.

“The end of life presents a unique perspective,” explained senior study author Dr. Dilip Jeste, senior associate dean at the University of California, San Diego’s Center of Healthy Aging.

“This is an extremely challenging time, a confluence of learning to accept what’s happening while still striving to grow and change and live one’s remaining life as best one can,” Jeste said in a university news release. “It’s this paradox that, if embraced, can lead to even greater wisdom while confronting one’s own mortality.”

The study, funded in part by the U.S. National Institutes of Health and the American Cancer Society, involved 21 men and women between the ages of 58 and 97 who were in the final six months of their lives and receiving hospice care. About half of the patients were dying of cancer.

The researchers asked these people opened-ended questions about wisdom, such as “How do you define wisdom?” and “What experiences have influenced your level of wisdom?” The patients were also asked if their illness had altered their understanding of wisdom. Each of the interviews was recorded, enabling the researchers to analyze and interpret the responses.

The participants ranked traits associated with wisdom. The most important quality listed was having prosocial behaviors, followed by demonstrating social decision-making, emotional regulation, openness to new experiences, awareness of uncertainty, spirituality and self-reflection, as well as having a sense of humor and being tolerant.

The patients admitted that facing their own mortality and imminent death dramatically changed how they viewed wisdom. “My perspective, my outlook on life, my outlook on everything has changed,” said one of the patients. “It’s grown tremendously.”

One common experience among the terminally ill was their desire to find peace or acceptance as their health declined and they lost their ability to function normally.

According to study first author Lori Montross-Thomas, “It wasn’t passive ‘giving up,’ but rather an active coping process. They emphasized how much they appreciated life, taking time to reflect. There was a keen sense of fully enjoying the time they had left and, in doing so, finding the beauty in everyday life.”

Montross-Thomas is assistant adjunct professor in UCSD’s department of family medicine and public health.

One study participant said: “For all my life, being a Southerner and having been in beauty contests, I got up in the morning, put my full makeup on and did my hair every day. A lady was never in her nightgown unless she was giving birth! Now all that is very, very difficult for me… I’ve accepted it, and I’ve realized that I have to let it go… I try to take all this with as much graciousness as possible and I’ve realized that my friends really don’t care that I don’t have makeup on or I’m in my nightgown. They are just happy to see me out of bed sitting on a chair.”

The patients also found that living with a fatal disease stimulated growth, leading to more determination, gratitude and optimism. The researchers noted this path to increased wisdom ebbed and flowed as the patients struggled to find balance, peace and happiness at the end of their lives.

Many patients focused on looking for the positive instead of the negative. “I want them to remember me with a smile, laughing and giggling and doing some of the silly things we do,” one person said. “Why do you want to leave on a sad note? I do not want to be remembered being sad.”

Complete Article HERE!

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01/12/18

Signs of the Journey Towards Death

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Recognizing the dying process

The dying process usually begins well before death actually occurs. Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, and nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As a person comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead.

As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins: One to Three Months Prior to Death

Behavioral and Psychological Changes: As a person begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings.

They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories.

They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

Physical Changes: The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engage in activities they once enjoyed. They no longer need food nourishment. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes: This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people who aren’t there. Often times these are people who have already died. Some may see this as the veil being lifted between this life and the next.

The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes: The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation is diminished. This is often more noticeable on the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed, talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breaths followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dyingduring this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred.

Complete Article HERE!

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01/9/18

This Was Not the Good Death We Were Promised

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When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

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11/26/17

Families turn to death midwives for help with final passage

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Anna Benton, of Milwaukee, left, Georgette Paxton, of Madison, center, and Jennifer Snow, of Waunakee, look over Heather Ockler, of Monona, who is playing the role of a dying person wrapped in a shroud during a home funeral demonstration. It was part of a death midwife class taught last month by Sharon Stewart, who helped aspiring death midwives practice skills such as washing and shrouding a body. Death midwives, sometimes called death doulas, are increasingly helping families prepare for and navigate the death of loved ones, in addition to or instead of hospice care and funeral homes.

By DAVID WAHLBERG

Before Valli Warren’s husband died last year after a long illness, the Stoughton couple knew they wanted a home funeral and green burial.

But they weren’t sure how to make those things happen. They turned to Sharon Stewart, who delivered ice packs to preserve the body, shared videos about how to wrap it in a shroud and taught pallbearers how to carry it out of the house on a board.

Stewart also helped Warren file paperwork, including a permit letting her transport her husband to Circle Cemetery, near Barneveld, where he was laid to rest without being embalmed or using a casket or vault.

“She walked me through every phase,” Warren said.

Stewart is a death midwife, a new kind of occupation that provides emotional, spiritual and practical support to families before and after death — in addition to, or instead of, hospice care and funeral homes.

The service, which has emerged around the country over the past decade, is analogous to what birth midwives do compared to obstetricians. Some who offer the assistance call themselves death doulas or end-of-life midwives.

‘Back to their roots’

Whatever the title, the providers say they help people “take back” the death process from hospitals and funeral homes. Services include leading family discussions about death planning, sitting vigil with people as they die, helping family and friends wash the body afterward and aiding in tasks such as selecting memorial cards, sending obituaries to newspapers and closing social media accounts. It often involves home funerals or green burials.

“We’re taking families back to their roots, the tradition of when we were born and when we died in our own homes,” said Stewart, a former detective who lives near Brooklyn, south of Madison. “We laid in honor in our parlors, and the community came together to provide care for the family.”

Liz Humphries, a former birth midwife and hospice nurse who recently added an end-of-life doula service to Seasons of Life, her senior care company in Middleton, said, “It’s about reclaiming a really sacred and beautiful human experience.”

Mary Paulauskis, a former hospice nurse from Madison, has added what she calls end-of-life transitions counseling to her business, Mindful Awakenings, through which she teaches meditation.

Paulauskis focuses on helping people think about who and what they want around them as they die. She also coaches loved ones on what to say to a dying person and how to interact — letting them know it’s OK to lie next to the person if they want to, for example.

“It’s creating a space of whatever the patient said they want,” Paulauskis said.

Many people don’t realize that there are several ways to dispose of bodies without embalming, including new, greener types of cremation, said Angie Buchanan, a death midwife in Waukesha who trains death midwives around the country. She informs clients of the options and guides them through their choice.

“We’re the water that runs between the rocks of the medical profession and the funeral industry,” Buchanan said.

Dr. Toby Campbell, chief of UW Health’s palliative care program and a board member of Agrace Hospice and Palliative Care in Fitchburg, said he understands why death midwives are catching on. He said hospice care typically includes two or three visits a week from a nurse or social worker, and an occasional call from a doctor.

“That leaves about 99 percent of the time you and your family are on your own,” Campbell said. “That’s a big space. There are giant gaps between the health care system and death, even including hospice.”

Jim Olson, president-elect of the Wisconsin Funeral Directors Association, said caring for a body after death and managing a funeral are big jobs. Most people will continue to seek help from funeral directors, he said.

Death midwifery is “another alternative for families, which we think is great,” said Olson, who owns Olson Funeral Home and Cremation Service in Sheboygan. “Am I afraid it’s going to affect my business? No, absolutely not.”

There is no licensure or government certification for death midwives. Experienced practitioners, such as Stewart and Buchanan, offer training, as does the New Jersey-based International End of Life Doula Association, which held a session in Madison last year.

Many training programs offer their own certification. The burgeoning field is in a similar situation to massage therapy in the 1990s, before doctors pushed for its regulation, Buchanan said. In Wisconsin, certification for massage therapists started in 2003, with licensure beginning in 2010.

Fees for death midwives vary. Buchanan said she charges $100 for a consultation and up to $2,000 for services covering the whole death process. Stewart has accepted donations of $100 or $200 from some clients, but she doesn’t plan to establish rates until she retires from her day job, at the state public defender’s office, and devotes more time to death midwife duties.

Paulauskis said she plans to charge $25 to $50 for a counseling session and negotiate rates for other services but let people pay what they can. An academic adviser at the UW-Madison School of Social Work, she plans to continue making her living in other ways.

Humphries, who started her end-of-life doula service last month, said she might charge $40 to $100 an hour but offer a sliding-fee scale for people with low incomes.

Humphries is also an organizer of Walking Each Other Home Madison, a group that started in 2014 to help people carry out home funerals and green burials. People can rent the group’s home funeral kit, which includes a body board, ice packs, soap, lotion, diapers, latex gloves and small bags of rice to place over the dead person’s eyes to keep them closed.

‘The personal touch’

Stewart, who has long volunteered at Monroe Clinic’s hospice program, said she saw the need for a more personal death service after her brother died in a car crash at age 19. She was 21.

Police came to the house in the middle of the night, told her mother her son was dead and left. Stewart wanted to see her brother’s body before he was embalmed, but the funeral director wouldn’t let her, she said.

“There had to be a better way,” she said.

Later, as a detective for the Lafayette County Sheriff’s Department in Darlington, Stewart tried to deliver death notifications with more sensitivity. But she wasn’t able to do all she wanted to help grieving families. After a shoulder injury forced her to retire, she discovered death midwifery.

“I thought, ‘This is it. This is the personal touch. This is the attention that families need,’ ” she said.

At a death midwife class she taught last month, Stewart told students to help dying people reconcile with others if they ask, separate arguing family members at the bedside if necessary and encourage loved ones to say goodbye and leave the room if the dying person wants to die alone.

“Your job as a death midwife is to be an advocate for that dying person,” she said.

When Laurie Larson’s husband, Dennis Presser, died suddenly from a heart attack at age 54 four years ago, Stewart helped Larson and her two teenage children navigate the chaos.

Stewart joined Larson when she met with a funeral director to plan the funeral, which took place at the funeral home.

She organized an intimate gathering for family and close friends at the crematorium, with candles, incense and music. As Presser’s body lay inside an open cardboard cremation box, people read poems, told stories and colored the box. Then they placed him in the chamber, and Larson hit the ignition switch.

“I would never have had the energy to create that beautiful ritual,” said Larson, of Madison. “Sharon helped me in so many ways that I never would have thought I needed to be helped.”

Warren’s husband, Spencer, died at 64 from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.

Stewart helped the couple carry out their wishes. His body remained at home for three days, instead of being whisked off to a funeral home. “I had time to be with him; it was very healing,” Warren said.

As family and friends came for the home funeral, volunteers changed ice packs beside his body as he lay on their bed for viewing. Warren drove him to Circle Cemetery, where gatherers sang and played guitar before shoveling dirt over his shrouded body.

“It was the most natural thing I’ve ever experienced,” Warren said.

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