The Life Matters Media Connection, Part 2

I am delighted to announce that I will be contributing a second monthly column on the prestigious Life Matters Media website.

 

 

Life Matters

 

 

This column will be titled:  Relationships and Intimacy.  Here’s what I have to say about it:

 

The medicalization of dying, in hospitals, in extended care facilities and even in hospice, often leaves little room for the most human of experiences—intimacy. And yet being close to those we love—being able to touch and be touched, as well as having the privacy we need to express our feelings—are essential elements to living a good and wise death.

The sea change taking place in the popular culture, with regards to sexual minorities, people with disabilities, as well as seniors and elders, may not always be reflected in the way we care for those at the end of life. Conscious dying is virtually impossible if those around us are insensitive to our intimacy needs. And the truth is, this is just as pressing a concern for people in traditional relationships as it is for those in non-traditional relationships.

To find the inaugural column, titled — It Never Entered My Mind, look HERE!

Live As If You Are Dying

I’m delighted to share with you a new review of The Amateur’s Guide To Death And Dying. It appears on the blog of Licensed Mental Health Counselor, Mandy Traut.

Mandy Traut

Just like the famous Tim McGraw song, I good friend of mine recently reminded me to “live like I was dying.” Many of you know that I was a recent guest on Dr. Dick’s Sex Advice: Sex Advice with an Edge (Sex Wisdom Show). Well, my association with “Dr. Dick” (AKA Dr. Richard Wagner) developed into a good friendship. I see him as a role model and mentor. So, I was quite privileged when he asked me to review his new book, “The Amateur’s Guide to Death & Dying: Enhancing the End of Life.”

Richard is, not only a renowned sexologist – Board Certified by the American College of Sexologists, The American Board of Sexology, and The American Association of Sex Educators, Counselors and Therapists, he is the founder and former Executive Director of the nonprofit organization, PARADIGM; “Enhancing Life Near Death — an outreach and resource for terminally ill, chronically ill, elder and dying people.”AGDD_front cover

His book, “The Amateur’s Guide to Death & Dying: Enhancing the End of Life,” is developed to be a workbook for terminally ill patients going through the process of dying. But, the reader realizes early on that one need not be terminally ill to follow the exercises. As Richard reminds us, we all die at some point. Richard introduces the concept of “proactive dying,” referring to an attitude whereby one addresses one’s mortality head-on. Richard illustrates how honest discussions, education and preparation, and support from family and friends, can really benefit all of us. Rather than present a typical workbook with a sequence of exercises, Richard has adapted his own workshop, associated with PARADIGM INC, into written form! You, the reader, become a participant in his workshop as you explore questions of mortality, loss, sickness, and isolation. Eventually, you and your fellow participants come to see death as a part of life.

Whether going through the group process of exploring various issues, listening to presentations on preparing Estates and Advanced Directives, or discussing the stigma of talking about death and dying in the first place, the reader gets to reflect on his/her own thoughts and feelings about death and learns how to be prepared for end-of-life concerns. Richard normalizes death in the most compassionate, authentic, and empathic way. I appreciated that he, as a facilitator, found a balance between professionalism and disclosing his own personal stories, fears, hopes, and dreams to the group. Additionally, reading his book, I, not only reflected on my own fears related to death, but I strangely began to relate and befriend the other participants in the group. I felt as if I were walking the journey with them. It was humbling and moving, as well as educational and informative.

As the group workshop was coming to an end one of the participants read a poem with the theme of “live as if you are dying.” As I read (imagining myself in the room with everyone else), tears welled up in my eyes. By now, I knew the group members pretty well. I empathized with their fears, their anger, and their sense of loss. Then, I thought of my own life and relationships. Inwardly, I thought, “How often do we go through life on automatic?” It is true: Like sleep-walkers, we miss the little moments that make life precious. It takes a terminal illness or a traumatic event to wake most of us up!

In the end, I completed “The Amateur’s Guide to Dying” with several take-aways: To my readers and clients alike, I hope that you can ponder these ideas and see how they fit in your own lives.

1) It is smart to explore your end-of-life wishes while you are healthy and can make these important decisions.

2) Live as if you are dying – do not take one breath – one hug – one smile – for granted. After all, sometimes death comes when we least expect it.

3) Honor and cultivate your relationships – our relationships are at the core of a meaningful, worthwhile life.

One last word: Thank you, Richard for sharing such a fresh, revolutionary perspective with the rest of us. This is not an easy subject for most of us to swallow.

Complete Article HERE!

Patients, doctors, and the power of religious faith

By Dr. Suzanne Koven

In the lobby of the hospital where I did my medical training stands a 10½-foot marble statue of Jesus. Patients and visitors often pause before the imposing figure to gather their thoughts, pray, or just touch its smooth white foot. The hospital has always been secular, but the statue has brought comfort to thousands for over a hundred years. It also reminds doctors that, in medical matters, our patients do not necessarily see us as the final authority.

praying_handsSeveral surveys show that over 90 percent of Americans believe in God. It’s not surprising, then, that religion plays an important role in medical care. Just as there are no atheists in foxholes, a nonbeliever might reconsider while being rolled into the operating room or waiting for a biopsy result.

The clinical efficacy of prayer is difficult to measure, though researchers have tried. In one study, strangers were instructed to pray for patients undergoing heart surgery. The prayers did not seem to improve the patients’ outcomes. Interestingly, if the patients were told they were being prayed for, they had more postoperative complications.

Still, there’s no question that prayer benefits many people. Prayer, like meditation, can lower blood pressure and anxiety and put patients in a more positive frame of mind. Even doctors like me who are not religious appreciate the element of mystery in medicine; an unexplainable force that seems, at times, to aid recovery. I was discussing this recently with a patient of mine who is a nun. She pointed out that what I call a coincidence she calls a GOD-incidence — even though we might be talking about the same thing.

On many occasions I have found myself humbled and inspired by my patients’ religious faith, even when I did not share it and even when it did not produce a cure.

One devout woman in her 50s who was dying of uterine cancer made an appointment with me to discuss what she had only identified on the phone as “plans.” I assumed she meant hospice care, DNR orders, and pain management. But what she had in mind was none of these. She told me, matter-of-factly, that she had no fear of death, that she fully expected to be reunited in heaven with her late father, and that she looked forward to this.

She did, however, have some loose ends to tie up before then, including arranging for the care of her mother, an elderly woman who was also my patient. In a very organized and business-like way she told me that she intended to move her mother in with a cousin, and enlisted my help in transferring her medical care to a physician closer to her new home — or, her next-to-last home, the one she’d inhabit before she too arrived in heaven.

I found myself full of admiration for this woman, and envious of her, too. I could not imagine having this kind of equanimity myself, faced with a hereafter about which I did not share her certainty. I had to admit that God offered her more beneficial “end-of-life counseling” than I ever could.

Another time, I found myself in a diagnostic dispute with God. A middle-aged woman developed a series of neurological symptoms. Neither I nor several specialists could determine their cause. The patient, on the other hand, was quite sure that she had chronic Lyme disease. She’d had a divine vision one night, in which the word LYME appeared in large letters. For a few years she took antibiotics continuously, prescribed by a doctor who treats chronic Lyme.

Unfortunately, her symptoms progressed, and she ultimately proved to have ALS, or Lou Gehrig’s Disease. After the woman died, I reflected that while her vision had been misleading, it had brought her hope during the last years of her life — hope that she would not have enjoyed if she’d known from the start that she had ALS.

Occasionally, even I wonder if an event can be purely coincidence.

Years ago, I headed out of town on vacation, neglecting to tell a hospitalized patient of mine that I would not see her for several days. I had arranged for one of my partners to care for her, of course, but worried about whether she would feel I’d abandoned her. This was before the era of cellphones, and the pay phone at the seaside motel where I was staying was broken. I decided that it really wasn’t necessary to call my patient and went for a walk on the beach.

By the water, coming toward me, emerging through the bright sunlight, was a man wearing a T-shirt with a single word imprinted on it: my patient’s last name. I left the beach and found another pay phone. She was doing fine, and was happy to hear from me.

My patient the nun once asked if I might visit her mother, also my patient, at home when the older woman was near the end of her life. She asked if I would draw her mother’s blood during my house call.

I was a crackerjack phlebotomist back when I was an intern, but it had been years since I’d drawn blood and told her I might be rusty. That was OK, she said. She had faith in me.

I dusted off my black doctor’s bag, threw in a needle, some tubes, alcohol wipes and a tourniquet, and headed to my patient’s house. When the time came to draw the woman’s blood, I had trouble finding a vein.

“You can stick her again if you need to,” said the daughter kindly. I confessed that I’d brought only one needle.

“Then, doctor,” said the nun, “I will pray for you.”

I adjusted the needle slightly, and a flash of red appeared. I turned to the patient’s daughter, seeking her approval. But her eyes were not on me.

They were lifted to the sky.

Complete Article HERE!

Is Death The Enemy?

“In the end, the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days if we don’t help change this unfortunate paradigm.”

 

For many healing and helping professionals, death is the enemy. That doesn’t come as much of a surprise really. Everything in our training, as well as everything in our culture, underscores that mindset. But this principle can actually be counterproductive more often than we realize. I am of the mind that if we encounter our mortality in an upfront way, we will be able to demonstrate genuine compassion to our patients and clients as they face theirs.hospitalbed

Here are some things we might want to consider if encountering mortality is our goal:

  • Death isn’t only a universal biological fact of life, it’s also a necessary part of being human. Everything that we value about life and living — its novelties, challenges, opportunities for development — would be impossible without death as the defining boundary of our lives.
  • While it may be easier to accept death in the abstract, it’s often more difficult to accept the specifics of our own death. Why must I die like this, with this disfigurement, this pain? Why must I die so young? Why must I die before completing my life’s work or before providing adequately for the ones I love?
  • Living a good death begins the moment we accept our mortality as part of who we are. We’ve had to integrate other aspects of ourselves into our daily lives – our gender, racial background, and cultural heritage, to name a few. Why not our mortality? Putting death in its proper perspective will help us appreciate life in a new way. Facing our mortality allows us to achieve a greater sense of balance and purpose in our life as well.
  • Dying can be a time of extraordinary alertness, concentration, and emotional intensity. It’s possible to use the natural intensity and emotion of this final season of life to make it the culminating stage of our personal growth. Imagine if we could help our sick, elder, and dying clients and patients tap into this intensity. Imagine if we had this kind of confidence about our own mortality.

We healing and helping professionals can actually help pioneer new standards of a good death that our patients and clients can emulate. We are in a unique position to help the rest of society desensitize death and dying. And most importantly, we would be able to support our patients and clients, as well as those they love, as they prepare for death. We could even join them as they begin their anticipatory grieving process.EndOfLifeCareSOS024HIRESsmall

If we face our mortality head-on we will understand how difficult it is for our sick, elder, and dying patients and clients. We will be more sensitive to their striving to regain lost dignity by actively involving themselves in the practical preparations for their own death. If we can project ourselves to the end of our lives we will better understand our patients and clients as they try to negotiate pain management, choose the appropriate care for the final stages of their dying, put their affairs in order, prepare rituals of transition, as well as learn how to say goodbye and impart blessings.

Facing our mortality may even allow us to help our patients and clients learn to heed the promptings of their mind and body, allowing you to move from a struggle against dying to one of acceptance and acquiescence.

In the end, the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days if we don’t help change this unfortunate paradigm.

End-of-life care: ‘Shortfall in NHS services’

By Nick Triggle

There is a shortage of specialist end-of-life care in England, causing unnecessary suffering, experts say.

ENDOFLIFEPeople dying with the most complex conditions, such as cancer, dementia and heart and liver failure often need support from a range of professionals.

But a report – produced by end-of-life doctors and nurses – said many were going without the help they needed.

As well as being an inefficient use of NHS money, this could be causing greater distress at death, they said.

Specialist end-of-life care requires teams of professionals, including doctors, nurses, social workers, psychologists and pharmacists to work together to help manage pain and disability in the final year of life and ensure patients are treated with dignity and compassion.

As well as helping to achieve as comfortable a death as possible, the support can also reduce costs to the NHS by keeping people out of hospital, said the report, produced by a host of specialist bodies including the Association of Palliative Medicine and Marie Curie Cancer Care.

‘Paralysis’
Not everyone who dies needs such help as some deaths are sudden or unexpected.

Continue reading the main story

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Palliative care has the ability to save the NHS money and improve the care of patients”

Dr David Brooks
Association of Palliative Medicine
But the ageing population means there is a growing number of people with complex, long-term problems that need carefully managing at the end of life.

The report said it was estimated that between 160,000 to 170,000 people a year were currently receiving specialist end-of-life care.

The groups said this was a “significant” shortfall on the numbers who needed help. It said more than 350,000 people required some form of end-of-life care, the majority of whom would benefit from specialist care.

Dr David Brooks, vice-president of the Association of Palliative Medicine, said: “There is a shortfall in services that needs to be addressed. Palliative care has the ability to save the NHS money and improve the care of patients.”

It comes after there has been mounting concern about one part of end-of-life care, the Liverpool Care Pathway.

Complaints
At the end of last year there were suggestions the regime, which allows doctors to withdraw treatment in the last days of life, was being misused in places.

Relatives of dying patients had complained that their loved ones had been put on the pathway without consent.

Professionals working in the field had agreed to launch a review into how the system was working, but that was then put on hold when ministers said it should be done independently.

That review has yet to start, although the government is expected to announce details of it in the coming weeks.

Dr Brooks said the profession was keen to find out what had gone wrong, but he said the controversy and wait for the review had created a “bit of paralysis”.

“It is important we get this right and tackle what was happening, but there is a little frustration it is taking some time.”

Complete Article HERE!

End-of-life care, talks help folks die well

By Dr. Andrew Ordon

As doctors, we are taught that death is the enemy. We are here to stop it and if a patient dies, we have failed. That mentality has led to an alarming statistic. According to one study, 60 percent of your health care dollar is spent in the last 30 days of life. Wouldn’t those resources be better spent on prevention and defeating curable diseases earlier in life? Why do we try so hard at the very end? One reason is that we think we can defeat the disease and gift the patient with more time. But there are times when that is not a reality.

One obvious example is the terminally ill. People with Stage 4 cancer. That means they have a cancer which has spread from the local area to a distant location. Cancer starts out in one place, and if it is isolated there, it’s called Stage I. If it erupts from its local area but has not spread to lymph nodes it is Stage 2. If it has spread to nodes but has not spread beyond the region of origin, it is Stage 3. If it has traveled by lymph or through the blood stream to a distant organ, that’s Stage 4, which is as bad as it gets. This is when doctors tell you how long they think you have left.

In a study published in November in the Journal of Clinical Oncology, 1,231 patients with Stage 4 lung cancer were evaluated for their End of Life (EOL) experiences. They considered “aggressive” care to be things such as receiving chemotherapy in the last 14 days of life, ICU stays in the final 30 days and an acute-care hospital stay in their last 30 days.

Researchers found that patients who had EOL discussions before the final 30 days were more likely to receive appropriate hospice care than those who did not have EOL discussions.

The authors wrote: “Given the many arguments for less aggressive EOL care, earlier discussions have the potential to change the way EOL care is delivered for patients with advanced cancer and help to assure that care is consistent with patients’ preferences.”

I have overseen the hospice care of a relative and can tell you firsthand that it is far better than having no plan in place. Hospice nurses and doctors treat the family as much as the patient. But arranging for hospice care sounds a bit like giving up. It isn’t. It’s acceptance of the reality that we all make this journey. Hospice care is merciful and compassionate.

The time to discuss end-of-life care is before the end is near. It is possible to die well.

Complete Article HERE!

Embracing Death for Ourselves and Our Patients

I have the honor of having an essay of mine published on NurseTogether today.

“I want to celebrate my belief that living well and dying well are one and the same thing. I’m not talking about adjusting deathbed pillows so that the dying people can strike heroic poses for the edification of onlookers. I’m talking about achieving a good death in the context of real dying – with all its unpredictability, disfigurement, pain, and sorrow.”

My name is Richard. I’m the founder of PARADIGM/Enhancing Life Near Death, a nonprofit organization with an outreach to terminally ill, seriously ill, elder, and dying people. I’m also the author of the newly published The Amateur’s Guide To Death And Dying. I’ve been invited to share some thoughts with you about my personal journey on patient deaths.

Although I’ve been working in this field for 30 years, I should probably say from the onset that witnessing patient deaths is not something I chose to do. It was more like this work chose me. Let me explain.

I finished my doctorate in San Francisco in 1981. That same year a mysterious thing began to happen. Gay men all across the country began to sicken and die from an unknown disease. Was this a diabolic plot of some kind? Perhaps it was divine retribution. Or was this simply a very serious medical emergency? The AIDS crisis had begun in earnest.

Because of my background in religion and psychology, friends turned to me for guidance, but I’m afraid that I had nothing to offer them. Nothing, in all my years of schooling, had prepared me for what was happening to the people I loved. I was petrified. All my greatest fears were being realized. What did it all mean? It was a desperate time and I was powerless. I could do nothing but sit and watch the nightmare unfold.

As it turned out, sitting and watching was the best thing I could have done, because as fate would have it, this time I was to be the student, not the teacher. In time, I became less anxious. The monstrous thing I feared for so long was being transformed. I was able to sit with death and not be afraid. Death was no longer the enemy, she had become what St. Francis called her, ‘sister death.’

Years of going from one death scene to another with hardly a break in between was exhausting but also rewarding. I began to see patterns develop. Despite the uniqueness of each death, I noticed there were two things all these deaths had in common. They were difficult and lonely affairs.

Difficult because in this culture we have a hard time recognizing when things are over, especially the things we enjoy – summer vacation, relationships, our youth and even life itself. This is a problem because being unable to acknowledge the end of something makes saying goodbye and thank you impossible.

And they were also lonely affairs, because the wisdom people come as they approached the end of their life often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.

Most people face their mortality in a vacuum of information and support. It is as if each of will have to learn to die from scratch, as if no one had died before us.

I figured there had to be a better way to deal with this fundamental fact of life. That’s why I’m here. I want to take a fresh look at my mortality, and do so in an interactive and positive way.

I look forward to other opportunities to address the topic of patient deaths and even dying as a personal issue in the weeks to come. Thank you for this opportunity to join you.

Complete Article HERE!