A 56-Year-Old Physician Who Underwent a PSA Test

Six years ago, after celebrating my 50th birthday, I chose to begin an annual ritual of having my prostate-specific antigen (PSA) level checked. I have been a practicing academic oncologist with a clinical practice that is devoted exclusively to prostate cancer for 25 years. I also have a PhD in health policy. My dissertation found that older men who are diagnosed as having prostate cancer are less likely to have complete staging evaluations and are also less likely to undergo a prostatectomy or radiation therapy as treatment.

At that time, my PSA level was 1.5 ng/mL (to convert to micrograms per liter, multiply by 1.0), raising some concern. One year later, I had my PSA level checked again; it was 2.5 ng/mL. I met with a urologist, a faculty colleague with whom I had collaborated on research, and requested a biopsy, which was performed 6 weeks later. I was anxious: did I have cancer? If so, what was my Gleason grade? How much tumor? I had treated hundreds of patients with prostate cancer and had seen thousands of prostate biopsy specimens, but now this was my biopsy. Two days later, I called the pathologist, another faculty colleague, anxious to hear the results. The slides had just finished processing. Would I want to look at the slides myself? I ran downstairs, sat at the microscope table with my friend, and together we were the first to see the cancer. Gleason 3 + 3 in 1 of 12 biopsy specimens, 5% of the gland, and no evidence of lymphatic, seminal vesicle, or extraprostatic involvement.

Now, what do I do? I had counseled hundreds of men with similar biopsy results. Most of the men my age had opted for surgery, a small number opted for radiation therapy, and a smaller number chose active surveillance. I chose to be an informed patient and got an opinion from leading medical, surgical, and radiation oncologists throughout the country. In the end, I decided to undergo a radical prostatectomy. My selected urologist was a national leader. I came away from a discussion with him believing that a prostatectomy, performed by him on a healthy person like me, would have an extremely low risk of sexual, bladder, or bowel dysfunction and 100% 20-year prostate cancer–specific survival. I chose surgery, viewing the risks as small and the benefits as great.

Fast forward 5 years: cancer free. However, as a result of the surgery, my right arm and right leg are permanently weak, with this deficit appearing immediately after surgery. The reasons for this outcome are unclear. My PSA level remains 0, but my daily 5-mile jog is no longer possible.

Where am I now on the PSA dilemma in light of the recent US Preventive Services Task Force recommendations? It is clear that prostatectomy results in a very high chance of 20-year prostate cancer–specific survival, but even when the procedure is performed by an expert urologist, it can also result in significant rates of sexual, bladder, and bowel dysfunction and other less common adverse effects, such as my weakness. Active surveillance with longitudinal PSA tests and physical examination is associated with very low rates of bowel, bladder, and sexual dysfunction and has a high probability of correctly identifying when to move from surveillance to treatment. If I could do it all over again, I would not undergo the surgery; instead, I would opt for active surveillance. Even the most informed patient (me in this case) has difficulty making a truly informed decision.

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Mediation – Death vs Dying

— Nancy Meredith, November 1987

Death vs Dying
It’s not as if they are the same thing. Dying is still warm, still connected to life as we know it. Death is cold. Dying is letting go. Death is being gone. Death is something I don’t know anything about, except that embalmed bodies are poor representations of the people who once animated them. Neither is anything I like to think about. So I figure they are probably topics I should give some attention to, to try to write some of the feelings they engender.

If I Should Die Before I Wake
It was only recently that I realized how early I had lay me down to sleep. I began very late in life the struggle to wake up from the soft comfort of my habits and routines. It’s hard getting up out of a warm bed when you don’t know what the weather’s like outside.

Coming to Terms with Mortality
Thinking about my own death feels different from thinking about someone else’s, but both feel lonely. Both bring on a panicky “No! Not yet!” When I’m confronted with the death of someone who has touched my life, the feeling is that I should have done more, that there is unfinished business here. Guilt confused with feeling that we don’t always get dealt a fair hand.It’s easier to die symbolically than to be symbolically dead. I can imagine ways I mightdie, my reluctance to leave tempered with the need to comfort those I leave behind. There’s a bit of poignancy about it, bittersweet and loving. And I am still (somewhat) in control.But I have trouble going beyond dying to death. I am responsible for so much and so many right now. Who will do the work I’ll have left undone? Who will take care of the people I love and all the little things in my life to which I attach so much importance? Who will feed my cat? If I try this exercise long enough I sometimes experience a moment of clarity and a fresh perspective on what’s really important to do today, right now. But it’s never long before I tighten up with a renewed sense of urgency to do more, faster. When I notice reminders of my own mortality—a bleeding mole, tightness in my chest, recurring asthma—I inevitably resist. “No, not yet! I have too much to do!”

I don’t think I want to live forever. When I hear people speak of the immortality of the physical body as a viable option, I feel somewhat embarrassed, as I am by the part of the

Apostles’ Creed that avows belief in the resurrection of the body. My resistance to my own death seems to be not so much a reluctance to leave my body as an unwillingness to relinquish control. To trust that the people I love can get along without me very well.

Just Moving On
Dying must be a lot like moving from one place to another. I’ve said goodbye many times in my life. Life goes on—for me and for those I leave behind. But it feels lonely, especially at first, and the nostalgia for past lives never completely disappears.

A Taste of Humility
Raymond Kaiser observed that the bottom line about death is that sooner or later people are going to say “So what?” No matter how important you are in their lives right now, no matter how wonderful you are, they’re going to come to a place where they accept your


Mini-Deaths
absence and proceed with business as usual. Trying to experience how that feels is an exercise in humility. It defeats arrogance and renews trust in others and faith in the continuity of life.

Whenever I think of death—particularly my own—I feel lonely. On the other hand, all the dark, lonely times I create for myself are deaths of a kind. Whenever I allow myself to feel alone, detached from those around me, I am already, for a time, dead. I am saying No to life and embracing Not Life. Lately I’ve tried to bring the light of consciousness to these times, to experience them as mini-deaths, with the benefit of then being able to embrace life more fully. I emerge from the dark more sensitive to my connection with others in my life, more aware of their feelings, more caring about their needs. I am more present. Perhaps the value in practicing death is not so much to be able to die better, but to be able to live better.

Judgment
I don’t like death, and I cannot embrace it as “moving on to a better place.” I don’t like acknowledging its inevitability. I tremble before it. It constitutes, after all, a fall into the unknown. I recently signed up to be a Hospice volunteer. Maybe by helping others deal with imminent death—their own or that of someone they love—I can learn to look at death squarely and say, “So what?” but I don’t think I’ll ever like it.

Meditation — RECONSTRUCTING THE CHANGING FACE OF DEATH

RECONSTRUCTING THE CHANGING FACE OF DEATH
— Charles Corr

A large number of people are filled with great anxiety or discomfort at the mere mention of the term death. And yet death is, after all, one of the few common denominators that we all share.

Others report that they do not know what to think or feel about death, and that this perplexity makes them unsure about taking part in inquiries related to death.

Exceptions to these prohibitions against the study of death are sometimes granted to theologians or philosophers on the ground that their work focuses on the spiritual dimensions of death.

These conflicting viewpoints remind us of the limitations of our own experience and draw attention to the important role our own attitudes and personal concerns play in determining whether and how we will deal with projects concerning death.

Death is not a single, monolithic entity; it is a complex and many sided dimension of human experience.

I think it is helpful to start out, not with large-scale philosophical or religious theories of the ultimate meaning of death, but with a more proximate and prosaic examination of those experiences and attitudes that are related to death and encountered in our daily lives.

Death is present in the cycles of growth and decay that we witness in nature, in the pets and other animals we bury as children, in the cemeteries and funeral homes that we drive past, and in numerous aspects of our daily experience. Yet we lack a direct contact with natural human death. We are the first “death-free” society.”

People in our society are increasingly likely to be born, grow to maturity, have children of their own without ever witnessing the natural death of a close relative or friend. This situation is unique in contrast with the experiences of other peoples and or other times in the history of our country.

One more point to acknowledge explicitly is that the face of death, as we perceive it, is composed both of cognitive and affective elements.

Advance Directives are the beginning of care, not the end

Jerome Groopman, MD, FACP, and Pamela Hartzband, MD, FACP

One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.

In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.

Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.

Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.

This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”

After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.

Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.

This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.

The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.

The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.

This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”

Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”

Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.

Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.

Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.

Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?

Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.

While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.

Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.

Complete Article HERE!