• 50 Years - A Million Thanks
Hypothetical Scenarios

Hypothetical Scenarios

Welcome to Centerville, and the Centerville Browser's Bookstore and Coffee Shop. At one of the tables, sipping an espresso and looking over a stack of books about philosophy and patients' rights, is patron Paul Vargas; over by the travel section are other customers, Alan Russo and his wife. And finally, notable only by her absence, is bookstore employee Cathleen Johnson.... The scene is now set for the latest Fred Friendly Seminar, BEFORE I DIE: MEDICAL CARE AND PERSONAL CHOICES.

Following are three scenarios depicting the lives of each of the people introduced above. Throughout the program, a distinguished panel of experts assumes the roles of patients, family members, doctors, nurses, ethicists and spiritual advisors to examine some of the most daunting social, ethical and medical dilemmas related to dying in America today. The topics explored include: the inability of many people to talk about and face death; the nebulous nature of advance directives; the moral question of physician-assisted suicide; the strain of patient/physician communication; the effect of managed care on end-of-life options; the complexity of pain control; the promise of hospice care; the role of spirituality; the final authority on treatment options and the necessity of end-of-life medical training.

Cathleen's Story

Even under the best circumstances, terminal illness presents countless physical and emotional obstacles for patients both in seeking treatment and in preparing for their last days. The following story depicts many such challenges, and represents the universal medical nightmare that so many fear.

Cathleen Johnson, a mother of two, is faced with the stark news that she has advanced breast cancer. Although Cathleen is startled by her diagnosis, she quickly finds herself engaged in frank and emotionally difficult conversations with her surgeon, her oncologist and her family about the progression of her disease and her chances of survival.

As the case proceeds, the panelists and viewers are faced with a multitude of medical and personal issues central to a case like Cathleen's, including:

  • Why families, physicians and patients have such a hard time talking about the end of life;
  • How communication between patients and physicians influences the patients' attitudes about their illnesses;
  • How managed care financing affects life and death decisions;
  • Whether lump sum payment offers should be made to patients in place of treatment;
  • Whether ultimate responsibility for the decision to cease treatment lies with the patient, the family or the physician.
As Cathleen's condition is deemed terminal and the attempt to cure becomes the need to comfort, the panelists are thrust into the next phase of end-of-life decision-making:

  • How much pain medication can be legally and ethically administered?
  • Why are "DNR" (do not resuscitate) orders sometimes ignored?
  • How can medical professionals better prepare patients for their final days?
  • What role does spirituality play in the dying process?
As the hours pass, Cathleen's condition intensifies until she dies alone and in excruciating pain. Panelists and viewers are then left to contemplate the following:
Why do so many patients have to deal with this type of medical nightmare?

Is dying in America worse than it ought to be?

What actions can be taken to change the perception of death and the status quo?

Notable Quotes from Cathleen's Story:

On whether American's are dying in what is widely considered the modern medical nightmare -- alone, in excruciating pain and tethered to life-prolonging machines...

"Unfortunately, I think they are. Too many of them are. It's an absolute national tragedy. It's a national crisis. It's a national shame. We should heed this as a call to action to make it different."
-- Ira Byock, M.D.

On the communication between patients and physicians...

"Physicians who do it poorly are physicians who have not had to come to grip with their own mortality, who are not comfortable with dying. And they will extricate themselves. They'll give a diagnosis and leave the room quickly. The important thing here is that most patients, after you say the word cancer, don't hear anything else. And to go on and talk about the other information. ... She won't remember that tomorrow."
-- Claudia Fegan, M.D.

"I don't know this woman (Cathleen). We are about to begin a long journey together. This journey may end with her death. ... Even if she has a primary physician, the way we work in America is that, from here on in, I am responsible for this woman. So I have to create for her two things, optimism and the sense ... that I will be with her throughout the process."
-- Sherwin Nuland, M.D.

On the ethical nature of lump sum payments offered to some patients by their insurers...

"Well, 'ethically wrong' might be a somewhat weak description. No patient should be asked by anybody to swap the final days of their life to win a monetary prize by the company that's supposed to be -- with its folded hands, big rocks, Snoopy -- looking out for her interest."
-- Arthur Caplan, Ph.D.

On facing death and dying according to one's own rules...

"Patients have the right to die according to the rules that they set for themselves. It's so hard for our system to stop making moral judgments about the behaviors of patients when they are dying. We're supposed to die without losing our ability to meet everyone else's expectations. But the patient is facing her own death, and she wants to do it in a way that comports with her values."
-- Nancy Neveloff Dubler, LL.B.

On preparing a patient for their last days...

"The fear isn't having a wrong-headed resuscitation at the end. It's all the stuff that went before. The risk of not having elegant pain management, or not being cared for with elegance and grace, or not having a meaningful ... experience. I mean, who talked to her about videotaping what she wants to say at her daughter's graduation? ... How she wants her children to remember her? Does she have a chance to write letters? Those things are what we utterly are blind about."
-- Joanne Lynn, M.D.

On dying with dignity...

"I don't know whether it's possible to be dignified, when your body is breaking down on you. And, I don't know whether it's possible to manage pain in the way you want. Maybe we fool ourselves that -- somewhere out there in the ether -- there's a way to do it to make it right, when in fact, there isn't one."
-- Anna Quindlen

On the psychological divide between spirituality and suffering...

"We are lacking the spirituality which teaches us not pain control, but suffering control. I think we have gone a long way to pain control. We haven't budged on suffering control. ... Part of the suffering control has been done by hospice, the only institution that has done it. And in hospice we can get people to talk about oral histories, about giving back power, about learning the meaning of life, about connecting with God. If you can recognize that your pain is part of a larger picture, that there is a meaning to suffering, then dying would not be quite the horrific moment that it is."
-- Rabbi Maurice Lamm

Check the show transcript to read the whole discussion about Cathleen's story.

The Russos' Story

Planning for the end of life is particularly unpleasant for those who feel they are still in good health. Therefore, many people fail to have detailed discussions with their families and to create advance directives -- documents which protect their medical interests when they no longer are able to speak for themselves. The following hypothetical scenario allows panelists and viewers to examine this issue.

Sixty-five-year-old Alan Russo and his wife have just returned from their second honeymoon. Alan has no interest in learning about, let alone signing, an advance directive. However, after significant prodding from his primary care physician, Alan agrees to sign such a document. During this conversation, the panelists reflect on the following:

  • What is the significance of advance directives?
  • Why do patients need to clearly understand the meaning of an advance directive before signing one?
  • Why do advance directives not always fit the circumstances of an illness, and what happens when this situation arises?
Six years after he signs the advance directive, Alan has a massive stroke and his life changes dramatically. As he quickly loses all ability to communicate with those around him, a number of new issues move to the forefront of the end-of-life discussion, including:
  • Why do families, physicians and patients have such a hard time planning for the end of life?
  • What happens when family members disagree about whether or not to remove a loved one from life support?
  • What is the significance of surrogate decision-makers and health care proxies?
  • Who holds the final authority to terminate life support, and what are the primary variables in such a decision?
  • What impact do spiritual beliefs have in the decision to cease life support?
  • What role does the physician play in withdrawing life support.
After an emotional discussion about whether or not to remove Alan from the machine, a surprising event gives the family guidance.

Notable Quotes from the Russos' Story:

On the need for advance directives...

"We all die at some point in our lives, and we should have a say about it when we're well and it's not a threat, and that we can have some thoughts about how we would like that to happen."
-- Claudia Fegan, M.D.

On the often ambiguous nature of advance directives...

"Unfortunately, many of the documents people sign don't mean what they think they mean, and they don't reflect what the patient wants. The patient means, 'If I am not able to recognize family and loved ones, I'm not able to make decisions, and not able to get better.' But unfortunately, documents come in to hospitals at all times of day, and most often at night, that have these absolute statements and present tremendous problems for physicians and even more so for hospital administrators."
-- Nancy Neveloff Dubler, LL.B.

On the morality of withdrawing life support systems...

"I think morally we are not permitted to pull the plug. The man (Alan Russo) has life, the man may come out of his coma, as so many do. And who are we to act God?"
-- Rabbi Maurice Lamm

On what families should consider before taking their loved ones off life support...

"I think the question to be asked is, 'Is this how he's always going to be?' Yes, there might be a little cognition there. But, if he's going to be like this, unconscious for months and months and forever, 'Is this how he would want to be? And, would he want to be kept alive in this condition?' "
-- Constance Holden, R.N., M.S.N.

Check the show transcript to read the whole discussion about Alan's story.

Paul's Story

Physician-assisted suicide has emerged as an alternative for a growing number of terminally ill patients in America -- especially within the AIDS community. The issue has recently reached the Supreme Court and become the focal point of a much-heated debate. The essential question: Do patients have a right to decide for themselves how to die when faced with a painful and terrible death? The following scenario sheds light on this emerging issue.

Paul Vargas has AIDS and is convinced that the only way he can die with any dignity is through physician-assisted suicide. His doctors and friends, however, assure him that caring, effective and less controversial alternatives do exist. As we follow Paul on his journey, he and the panelists consider many issues, including:

  • Why is physician-assisted suicide is such a highly-charged subject?
  • Will physician-assisted suicide ever become an accepted alternative for the terminally ill?
  • What advantages are there to hospice care and why should it be considered as a viable alternative?
  • What moral obligation do physicians have in deciding whether or not to assist patients with suicide?
  • What constitutes a good death?
  • What actions need to be taken to improve end-of-life care?
  • Whether death actually can be a rewarding part of a patient's life.
In time, Paul accepts that there actually may be alternatives to suicide and decides to give hospice a chance. He remains steadfast, however, in his belief that physician-assisted suicide will always be an option.

Notable Quotes from Paul's Story:

On physician-assisted suicide...

"First let me say that patients with AIDS who ask for assisted suicide are in a totally different category than any other patient, and it turns out that, (with) this particular disease, there is the highest frequency of people asking for assisted suicide. They have seen people die with AIDS dementia, which means they really have no idea of who they are or where they are for weeks or months before they die. They have seen people die blind because of the so-called retinitis that affects the inner aspect of the eye. They have seen people die with infections and sores all over their bodies. They have seen people wasted into 70-pound wraiths. That's not the kind of thing that you can see without ... when the diagnosis comes ... thinking seriously about suicide."
-- Sherwin Nuland, M.D.

"For a patient to ask that question of one of us, I think requires a phenomenal amount of courage."
-- Karen Stanley, R.N., M.S.N., AOCN

"We put it under this entire rubric called 'assisted suicide.' There's a qualitative difference between firing something into someone's IV line that's going to stop their heart ... and writing someone like Paul a prescription. ... Over and over again, I hear that people find solace not in taking the pills from that prescription, but in owning that prescription."
-- Anna Quindlen

On a personal encounter with a friend who asked for help in committing suicide...

"I run to the hospital and it's very clear that this is close to the end of her life. ... And she says, very clearly, 'Would you please give me a shot so I can just go to sleep. I don't have enough courage to do this anymore.' At that time, I felt that I was the one who didn't have any courage. Here I was in the face of this -- what seemed at the time -- to be a very reasonable request. And I felt cowardly and ashamed."
-- Karen Stanley, R.N., M.S.N., AOCN

On a physician's struggle over his or her own role in assisting patients commit suicide...

"That is the real dilemma. ... On the one hand, we want to protect the physician's role, so that he's not a death dealer. On the other hand for my wife I would do it. All of us sitting at this table, by dint of our profession or our sociology, have at least some hope that somehow or other, someone will do it. Whether they will just give us the information or actually give us the injection."
-- Willard Gaylin, M.D.

On whether America's current health care system can support physician-assisted suicide...

"You (Will Gaylin) have the relationships and the bonds and the understanding. As an institutional policy? As a law? As a practice for the profession? I don't think the system is up to it. If I dare call it a system, this mishmash that we have with some people offered hospice and Paul being led down the road with options. And other people homeless, uninsured, dying in the street, IV drug abusers. Where's the conversation there?"
-- Arthur Caplan, Ph.D.

On the hospice experience...

"Pain is such a narrow part of the experience. ... It's physical, it's emotional, it's spiritual. It can even be financial. And hospice teams are prepared to look at all parts of the suffering, not just the physical."
-- Constance Holden, R.N., M.S.N.

Check the show transcript to read the whole discussion about Paul's story.

Conclusion

BEFORE I DIE: MEDICAL CARE AND PERSONAL CHOICES concludes with a final look at some of the difficult issues surrounding dying in America for which there are no clear-cut explanations. In their closing remarks, the panelists reflect, once more, on improving the dying process, the overall meaning of death, its mysterious nature and finally, on accepting death as an inevitable part of life.

Notable Quotes:
On the dying process...

"Dying is more than a set of medical problems to be solved. Dying is a part of living, and it's a part of the life of every individual, every family, every community. I would submit that the real solution is not medical, its cultural."
-- Ira Byock, M.D.

On demystifying death...

"How can you demystify death? I mean, death is the ultimate mystery. We're the animal that's forced to suffer with the knowledge of our death. The only one."
-- Willard Gaylin, M.D.

On dying with meaning...

"The way to ameliorate the sting of death is to be able to control the suffering by teaching people how to live with meaning and, therefore, die with meaning. How to understand that death is not the ugly specter that we had painted it, that we're afraid of."
-- Rabbi Maurice Lamm

On making death acceptable...

"I think we have to make death acceptable. We have to tame it. We have to educate patients that doctors can sometimes cure and sometimes only comfort. We have to make hospitals acknowledge that patients come there for treatment and cure, and they also come there for death. We have to set in place institutional supports, so that it doesn't take the extraordinary courage of one nurse or doctor to bring comfort to a patient."
-- Nancy Neveloff Dubler, LL.B.

On the importance of incorporating end-of-life issues into medical training...

"Medical schools need to become more enlightened, and need to understand that people, in fact, die from medical illness. You read medical textbooks. It appears as if no one ever dies from a medical illness."
-- Richard Payne, M.D.

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