Facing The End Of Life With Laughter

Facing The End Of Life With Laughter

Posted on Sunday, July 13th, 2014 at 8:30 am by lifemediamatters

Jen Bosworth uses comedy to make others comfortable with a not-so-funny subject: death. After serving as her seriously ill mother’s primary caregiver, Bosworth incorporated her experiences into “Why Not Me…Love, Cancer and Jack White.”

She spoke with Life Matters Media about her one-woman show and her upcoming collaboration with Life Matters Media.

What is ‘Why Not Me’ about?

It’s a show about celebrating life, and it’s also about seeing the beauty and tragedy when someone approaches the end of their life. It’s about taking opportunities to talk with our loved ones about it.

I’m a comedian, and the show’s definitely not a bummer– it’s been called a triumph and hysterical. It’s a comedy about cancer, end of life, among other things.

What inspired you to write and perform this show?

bosworth---why-not-me-poster-new-datesI was my mom’s primary caregiver. In 2010, metastatic breast cancer came back and spread into her lungs. I made a conscious decision that I would put my life on hold to be with her and take care of her. During those 18 months, I started writing down my thoughts and feelings, even funny anecdotes we had together. After she passed away in 2011, I had a friend approach me and tell me I needed to make a show.

Three days before my mom passed away, she called me over and she said, ‘Look, I know you’re an artist and I want you to promise me that you’ll pursue that.’ It was sort of her dying wish.

How does it feel honoring your mother through your show?

It feels amazing. My mom was a Colombian immigrant, and she was really direct, assertive and funny. The law around my house growing up was that you do what mom says. I think towards the end of her life she realized I could help people through comedy.

How does the musician Jack White come into the play?

I’m not a huge music buff, I didn’t really even know who the White Stripes or Jack White was. But I began to have these vivid, reoccurring dreams about him. I don’t know how it got implanted.

Now looking back, it was sort of my escape from the hardships and tragedy of what cancer was doing to my mom. It was like a fantasy life that I created at night in my dreams to cope. You know, I’m happily married, I have a wonderful husband, but I started to have this bizarre nocturnal relationship.

I didn’t tell anyone, but now I think it’s important to share because when you go through something horrible there needs to be an escape. His music was my escape.

Once my mom passed, those Jack White dreams stopped. It could have been anybody, it could have been David Hasselhoff from Knight Rider, Paul Newman or Brad Pitt. The show really flatters Jack White, I hope he knows about it.

What inspired you to partner with LMM?

I have strong, warm and passionate feelings for Life Matters Media, and that is why I wanted to partner for the August 1 show. On the local, national and even international level, Life Matters helps get conversations about the end of life started. When I was thinking about working with nonprofits, Life Matters was one of the first organizations I thought of.


Approaching End Of Life Conversations

Posted on Thursday, June 19th, 2014 at 8:22 am by lifemediamatters

As hard as it may be for the physician and the patient, clear and compassionate discussion about choices will serve everyone

This piece was first published in Chicago Medicine (page 24-25). LMM President Randi Belisomo is a contributor.

In medicine, language matters. When a patient is diagnosed with a terminal disease, clarity in communication and word choice can have immeasurable impact on how patients choose to spend their remaining time. Once communicated, the hard-to-say and even harder-to-hear truth can shift the entire focus, or lack thereof, in an examination room. Instead of fielding inquiries about scan results or a research trial, physicians may guide patients and their families to look at a bigger picture, without being caught up in the clinical details.

  • Is it time to take the last trip to Florida? Yes.
  • Is it time to stop working in order to be together as a family? Yes.
  • Is it time to communicate everything that patients have been meaning to share with the kids? Yes.
  • What are your patients waiting for? You.

Acknowledging Reality

Resolution, reconciliation, and the peace, grace and comfort most of us hope for at our time of death can only come by first acknowledging the reality that death

LMM President and Co-Founder Randi Belisomo

LMM President and Co-Founder Randi Belisomo

is taking place. That someone is indeed dying. A recent study reported in the New England Journal of Medicine evaluated patients’ understanding of the goal of their cancer treatment. More than 70% of patients enrolled did not understand that they had incurable disease.

Another study published in the Journal of Clinical Oncology demonstrated that better end-of-life dialogue between doctors and patients results in different care options: those who talk with their doctors about end-of-life care at least one month before they die are more likely to choose therapy that is less aggressive and aimed more at making them feel better. Authors suggested that having such discussions soon after a terminal diagnosis gives patients the time to process the idea that their life is nearing an end. Therefore, they are empowered to make thoughtful, informed decisions about their treatment.

One of the biggest barriers to facilitating quality end-of-life discussions—the kind that lead to patient empowerment in the form of advance directives, finalizing legal and estate plans, creating a family legacy and meaningful use of one’s time—is not always the patient; often, it is the doctor. Even the most experienced and skilled physicians sometimes pause, or avoid the inevitable altogether. Noted physician and author Abraham Verghese wrote, “I had always felt inexpert when a patient was near death. Give me a patient with massive gastric bleeding or ventricular fibrillation and I am a model of efficiency and purpose. Put me at a deathbed, a slow dying, and purpose is what I lack.”

Imagining yourself as the Patient

But a physician’s purpose near death is paramount. Physicians are often uncomfortable delving into a problem they are unable to fix. While doctors may not be able to fix a problem, they have so much positive power in their ability to relieve suffering and provide comfort—actions that could mean everything to dying patients and their families in the most stressful time of their lives. How to do this?

Empathy

Physicians must put themselves in their patients’ place and allow the time to do it. It may be the third such conversation a doctor has facilitated that day, but it is the first time the patient has ever heard it. It is scary, overwhelming, sad and uncomfortable. But however hard it is for a physician to say, it is most likely the hardest thing a patient has ever had to hear.

Honesty

Don’t sugarcoat reality. Doctors must tell patients the facts of their condition, because only in knowing can they make a fully informed decision about how best to proceed with whatever time is left.

Clarity

Euphemisms may be easier to use, but what physicians often say is not what patients may hear. Clear and compassionate language matters.

Planning

One of the hardest things for patients and families upon hearing such dire news is that they often interpret it to mean there are no more options available; that there is nothing physicians can do. “No further treatment is available” is the worst thing a patient can hear, and it is not true. Patients and families need something to do, and physicians can provide that in providing a care plan. There is comfort care.

Easing of Pain

Enabling a patient to have the best day possible—that is a true goal of care. But even the greatest medical communicators face plenty of barriers, some obvious and often discussed; patient denial is a common one, as is hope in some “miracle.” But others are more subtle.

Fear of Disappointing

It may seem strange that often in end-of-life cases, patients are afraid to bring up the reality of death because they fear letting down their health care team. Somehow, it would be seen as a failure on their part if they are declining rapidly. In the course of interviewing so many at the end of life, this fear is a reality that comes up time and time again. Physicians are trained to make patients better, and if a patient isn’t getting better, it is disappointing. That patient doesn’t want to bring up what may be perceived as a medical failure. Don’t make the patient address it first—that’s the job of the physician.

This fear of disappointment must be eliminated to enable quality end-of-life care. How can a physician shift from treating symptoms to overall well-being from disease therapy if he or she isn’t receiving the full story from a patient? This fear of disappointment can be lessened by clear language.

  • Are you afraid of dying?
  • Are you afraid of pain?
  • Are you afraid of being alone?

These questions are more likely to lead to comprehensive and attentive care than the common request: “Tell me about your symptoms.”

Fear of Abandonment

That shift to caring for overall well-being instead of treating disease is one that providers must let patients know they do, too. For example, if hospice is the next step, let patients know that not only will they get outstanding comfort, but also if they need to call, they can. At the end of life, everything is seen as a loss. Is this the last time I’m going to see this person? Is this the last time I’m going to venture outdoors? Is this the last time I may enjoy a meal? Don’t allow a patient encounter to feel like it is one more thing that needs to be mourned, one more loss, or one more uncomfortable situation for the patient.

Fear of Isolation

If patients are nearing the end of life but are well enough to be coming back and forth to the doctor’s office, they may feel like a sore thumb. To be the sickest person in the waiting room is terribly lonely. This fear correlates with the fear of disappointing the care team; patients need to know that their physician has cared for patients in their situation, will care for more in the future, and will continue to care for him or her. It is so comforting for a patient to know they are not the only one.

It’s Up to You, the Physician, to Provide this Gift of Compassion

It is practically impossible to provide quality end-of-life care without acknowledging the reason for it. The clear and compassionate truth empowers patients to gain what they want the most in times of tremendous loss. This gift is one only the physician can give, and do so graciously.


Stephanie’s Story

Posted on Saturday, May 3rd, 2014 at 2:43 pm by lifemediamatters

Margaret, Peace at Last

Noreen B. Coussens

The trees in the hospital lawn began to look as stark as my hope for Margaret. The leaves abandoned the branches, separate now forever. Margaret’s life had evolved; it was once full with many experiences and friendships blossoming. As the leaves became full and green, so did those solid friendships. Times of stormy weather, the wind blew the changes through her life. Still sustaining and holding on. Gradually, as life would have it, the leaves of friendship evolve- some dying off, others becoming more brilliant with new shades of color. Now, the leaves- like friendships- have abandoned this tree named Margaret. Margaret struggling through her last storm, only to be reunited and begin a new life. The bare tree will remain as a memory. Next spring, this tree will begin to bloom with tiny buds. Although that tree will begin anew, Margaret is not part of this rejuvenation. Her life is now that of an angel.

Like many elders, Margaret had limited knowledge of health care. Ironically, she served as a nurse’s aide in military hospitals during World War II. Margaret saw the face of pain, grimacing for relief. She knew too well that relief would arrive in the form of death. This aide held, prayed for and cried with wounded soldiers. Medical care was primitive in comparison to the technology of today. There were no beeping machines taking the pulse of a patient. No sounding alarm when the pulse stopped and life ended. People died, tragically. This was the reality of war.

Fast forward to 2010, and technology can prolong life by providing nourishment, medication and breath. The human body, no matter how frail, can be kept existing, heart beating with all of the modern medical inventions. Inventions have become the crux of aging in modern times. A pacemaker will force the heart to beat at the designated rhythm prescribed by a physician. A feeding tube can be placed when swallowing food is no longer possible. A mask will force either air or oxygen into a person’s lungs so that breathing can continue. All bases are now covered, right? So wrong.

The term “person” has become a system of mechanical devices. Heart, lungs, GI system all part of this mechanical entourage. The soul of the person can be maintained only through a life that is meaningful. Can a life be meaningful if it is being mechanically kept alive? In the case of Margaret, at 91, her life has been lived. She has experienced joys, sorrow, tragedy and outliving most of her close friends. Margaret occasionally questioned the purpose of life beyond 90 years. Baking Irish bread, a daily activity, was no longer possible. Swallowing that cup of tea caused her to choke. Falls became increasingly common. Conversations were better in person because she could see how lips were moving and try to interpret facial expression. The tiny strained voice reflected the tiny hunched over person Margaret had become. She wondered what her purpose was now. She could still cling tightly to her Rosary, one of the few consolations left.

My last visit with Margaret in her home was to discuss hospice support. Margaret’s son was no longer able to keep her safe. She had several known and unknown falls. The fear of a fall leading to fracture weighed on his mind. He was not aware of resources available, nor was he able to be the caregiver much longer. Our conversation was put off as Margaret had expressed the desire to go to the hospital. She believed that if she had her throat dilated, her ability to swallow would be restored. Perhaps she would feel stronger and be back to normal. “But wait, before we leave, I want a cup of tea and a piece of soda bread.” Dutifully, her son provided. As Margaret attempted to swallow, she became distressed with choking and vomiting. Another sip of tea; another episode of choking.

An ambulance was not an option. It would not bring her to the hospital of choice. Margaret sat in the wheelchair and was carried by her son into the seat of the car. Her last exit from her home. Upon arrival to the hospital, the reality of Margaret’s health was confirmed: pulse 34, blood pressure 73/40. To me, it was obvious. Margaret was beginning her final journey. My hope was that this would be a peaceful transition into the heavenly life that all of those Rosaries were offered for. Margaret outlived so many others, her mind was still intact. What a beautiful way to leave this world.

After allowing the emergency room team to do their assessments and have the necessary discussions with Margaret’s son, I checked in on her. The whisper and smile were such a struggle. I hesitantly introduced myself and explained that I was in the field of geriatrics. “Oh, well, she’s going for a CT scan of the brain.”

“Why?” I asked, wondering if I had missed something.

“The doctor wants to make sure she didn’t have a stroke.”

“Why would she think that?”

“Well, you know, all the falls. I’m just following orders.”

I have abundant respect for nurses. “Did it occur to the doctor that she is so weak that she cannot support herself, and this is why she is falling?”

“You would think, wouldn’t you?”

My dream of a peaceful departure for Margaret was ending. Waking up to the reality that Margaret was about to become a victim of being kept “existing” by the mechanical list of medical interventions. First was the oxygen mask, forcing air for her to breathe; then came IVs for fluids, and to offset chemical imbalances from the heart being so weak. Admission to the intensive care unit. Again, the nursing staff did their best, while also following orders.
I believe that even in a weakened state, people can attempt to make their wishes known. Margaret attempted to pull out the IVs and kept removing her oxygen mask. This led to physical restraints- on a 75 lb, 91 year old. Discussions with her son were held several times a day. He was waiting for her to “give up,” as he believed she still wanted to fight. Her attending physician, who claimed to know Margaret so well, decided that Margaret was not ready to die. She wanted to live.

So, the decision was made for Margaret to have a feeding tube inserted. Once that “worked,” a pacemaker would be put in to keep her heart beating regularly.

I received a call three days after the ER admission from Margaret’s son. He explained all that the doctor had in mind. When he mentioned feeding tube, my Irish temper came into play. I expressed my objections, voiced as concerns. I could not let this happen. But this was not my mother. My mother, however, was Margaret’s best friend. I relied on this logic: if it were my mom, I would not allow any more mechanical things to keep her “alive.” What else could I do?

I called the hospital and asked if they had a chaplain or social worker in the ICU. I explained that although I had no direct say in Margaret’s care, I felt that her son was not aware that he DID have a voice.

Eventually, I was referred to Bernadette, the palliative care nurse. Divine intervention, she was from Ireland, just like Margaret! I explained who I was and expressed my concerns. Yes, Bernadette was aware of this situation. Although HIPAA prevented her from telling me anything, nothing prevented me from talking and her from listening.

Bernadette did speak to Margaret’s son. He called me to tell me about this wonderful lady trying to help, but he was still not convinced that mom was ready to let go. Oh please God, a sign.

Did I mention divine intervention? Twice in 48 hours, Margaret’s son called. “They were ready to begin putting the feeding tube in, and when they removed the oxygen mask, she looked at me and said, ‘for God Sake, I’m 91 and a half years old, please let me go.’” Margaret had spoken loud and clear.

I remember this moment like yesterday. “I am on my way, and everything will be ok now. Her suffering is over.”

Margaret finally had that mask taken off. The restraints were released. She was still anxious and agitated, but medication was given with kind, gentle hands to help her calm down. Her niece prayed with her in Gaelic. The rosary was recited with loved ones surrounding Margaret in prayer. She held a cross that she requested be in her hands on her death bed. Five hours after being freed from physical restraints, Margaret was freed from the struggles of this world. May she rest in peace.

Noreen B. Coussens serves as President and Geriatric Care Manager at Elder Guide, Ltd.


How Do You Know When It’s Time For Hospice?

Posted on Monday, April 28th, 2014 at 2:26 pm by lifemediamatters

This piece was first published in Reuters Health. LMM President Randi Belisomo is a contributor.

Worn out and needing someone to know she was desperate, Jen Bosworth called her mother’s physician.

The Chicago-area drug counselor had spent two years caring for 67-year-old breast cancer patient Ines at the time in 2011, and her mother’s wellbeing was declining as quickly as the cancer seemed to explode.

“She was having problems getting around, and treatments weren’t working,” recalls Bosworth, then a 35-year-old newlywed. “She was spending more time being schlepped around than enjoying life.”

Bosworth’s doctor welcomed the call, offering a new option: hospice care. “I was totally afraid of that word,” remembers Bosworth, who wrote a one-woman show about her mother’s illness, Why Not Me: Love, Cancer and Jack White. “I thought it meant she would die the next day.”

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Death Is A Hard Sell

Posted on Saturday, April 26th, 2014 at 8:22 am by lifemediamatters

Ars Moriendi, 15th century Latin texts offering advice for a good death. Courtesy Wikimedia Commons.

“Ars Moriendi,” 15th century Latin texts offering advice for a good death. Courtesy Wikimedia Commons.

I recently had a very interesting weekend. On Saturday, I attended a daylong event at a local cancer research center called “Moving Beyond Cancer to Wellness.”  

In addition to several thought-provoking workshops, it also included a small vendors area. Many cancer-related agencies had set up tables to display brochures for their programs for those living with cancer. There were a surprising array of support groups, exercise programs, nutritional programs and spiritual programs.

Apparently contemplating mortality– even when it is staring us in the face– is not the politically correct thing to do.

I thought this would be the ideal setting to network with other like-minded folks, so I introduced myself to the vendors and proudly handed them a copy of my book. The reactions were nearly always negative, or at least ones with a bit of alarm. Once they saw the title, The Amateur’s Guide To Death and Dying; Enhancing the End of Life, the smiles that had greeted me soon dissolved into dismay. It was as if I had handed them a dirty diaper. Perhaps they thought they would contract death cooties from touching it.

It was immediately clear that bringing a book about death and dying to a cancer survival event was a huge faux pas– despite my protestations that the work of these agencies and the information in my book were much alike. I wasn’t able to convince any of them, and I was bummed.

I get it. Death is a hard sell to the disease-specific crowd. Apparently contemplating mortality– even when it is staring us in the face– is not the politically correct thing to do.

But why? Facing our mortality doesn’t undercut a commitment to “fighting” the disease process. Consciously facing the prospect of life’s end really helps put an effort of “fighting” disease into perspective.

Curiously, the reaction I received from other participants was much different. I think most who encounter mortality through a disease process like cancer know that this could be the beginning of the end. Why else would people react as they do when they receive such a diagnosis?

These participants have already put themselves there, at death’s door, at least in their mind’s eye. That sort of introspection can take some of the sting out of death. Were these other participants any more enthusiastic about taking a long hard look at their own mortality?  Probably not! But they weren’t as resistant to the idea as were the ostensibly healthy people manning the tables.

I try to imagine what things would be like if we all were encouraged to examine the end of our lives as a matter of course, much in the same way women are encouraged to do periodic breast self-exams. Examining breasts for lumps or other abnormalities doesn’t increase the risk for breast cancer, right? Nor does facing one’s mortality in a conscious, upfront way hasten death.

The next day, I met with a young couple for their weekly counseling session. Once we were settled in, I handed them a copy of my book.  The young man spoke first. “That’s a bit scary,” he said after reading the title. “Scary, I mean for the people who need this book.”

I suppose so. But do you know what’s even scarier? Not thinking about the end of life before it’s too late. Are you certain that you’re not among those who need the book now? Are you certain that you will live to see the end of the year, or even the end of the day?”

That very question opened the door to a fruitful discussion between the two. Most of their relationship problems stem from taking the other for granted. Nothing stops that kind of thoughtlessness and ingratitude faster than to imagine their world after the death of their spouse.

Death is a hard sell in our death-denying culture. Yet, each of those I encountered on that weekend will, in time, face the end of life. That’s a given.

The big question is: will they have the time or the inclination to face their mortality in a way that will enrich their lives as they live it to the end?