Know Your Wishes

.com

Lessons in Dying, Lessons in Living: Dr. Lauren Van Scoy’s book Last Wish - Stories to Inspire A Peaceful Passing (formerly DNR: Do Not Resuscitate)

Printed in the Jewish Exponent September 2011

By Diane McManus

Although—or perhaps, more precisely, because—life spans have increased, and greater medical resources are available to prolong life, it is all the more important to have plans in place for, as Dr. Van Scoy puts it, “what you’re willing to fight for and what you’re willing to lose” in quality of life.

“I spend half my day in the critical care unit,” observes Dr. Promisloff, and “a high percentage of patients are at the end of their lives. Hopefully we get some people better, but many are near the end and don’t have living wills.” He sees Dr. Van Scoy’s book as a valuable resource in its accessibility.

Through “storytelling,” it brings out “the need for discussing issues we see every day,” he explains. “People are living longer, have more options. They can live into their nineties, receive transplants—but eventually the end will come.” Last Wish brings up “different aspects of end-of-life care, the need to be more aware of patients and how to care for them.”

For example, cancer treatment need not necessarily involvIt seemed as if the patient would die. Awaiting a heart transplant, he developed an infection and was in a drug induced coma, on a ventilator. The doctor “would have bet on the fact” that the patient was dead. Indeed, he went into cardiac arrest, received CPR, and was stabilized. Even so, his fate appeared dire. Yet, a year later, expecting to find the same patient in that same gray territory between life and death, the doctor met a cheerful man sitting upright and enjoying his breakfast. A heart transplant had restored him to health.

By contrast, a woman whose only concern seems to be allergies acting up phones 911 when she feels short of breath. Fully expecting to be sent home once the allergy medicine has done its work, she makes a mental note to pick up cat food. Unfortunately, her shortness of breath worsens. Every breath is a struggle, and her x-rays show end-stage lung cancer.  If she is not placed on a ventilator, she will die within hours. Medicine can be given to keep her comfortable, but at the moment of decision, she wants only to be given air, to breathe. The doctor explains that she will not be able to speak once the tube is in and that it will most likely stay in, requiring a host of other decisions about end of life care: should she be given a feeding tube? CPR? To calm her panic, the doctor inserts the breathing tube. There will be no going back to her house.  After a few days on the ventilator, it is clear she will not awaken enough even to communicate in the most basic way with family members, and so the decision is made to remove her from the ventilator. Surrounded by her family, she dies soon afterward.

We meet these two patients in Dr. Lauren Van Scoy’s book, DNR: Do Not Resuscitate, (now titled Last Wish – Stories to Inspire A Peaceful Passing) along with three others, all unique, all presenting dilemmas that so often confront doctors and families of patients in critical care units. Their stories reflect the anguished choices that end-of-life care requires. The patients in Dr. Van Scoy’s book are young, middle-aged, and elderly. They have come to the hospital for varying reasons: heart disease, cystic fibrosis, lung cancer, among others. And their families respond with a medley of hope, helplessness, calm, anger, and resignation.

Dr. Van Scoy, currently an employee of Hahnemann University Hospital and in fellowship training in Pulmonary and Critical Care at Drexel University College of Medicine, explains that DNR expresses her own opinions and was written outside the scope of her employment at Hahnemann University Hospital and Drexel University College of Medicine.

Rather, it grew out of the need, as she states in the introduction, to “plant a seed in your [the reader’s] mind about some of the medical situations you or your loved ones may one day face.  I hope that DNR provides some insight for you and your family. It is with this spirit that I wrote the tales of the people with incredible stories, stories that kept me awake at night, begging to be written.”

Particularly poignant for Dr. Van Scoy is the story of Patrick. A nineteen year old cystic fibrosis patient, he is prepared beyond his years for what he will face. He tries as much as possible to have a normal life, enjoy a vacation, have a girlfriend whom he hopes to marry. However, diagnosed with a killer infection, he asks to be allowed to receive hospice care, rather than yet again have to fight another battle with his disease. Even so, his decision is in many ways life-affirming. He invites family and friends to a party—a wake, really, to give them and him the chance to say goodbye. He is able to convince his family to accept his choice and to let go.

On the opposite end of the spectrum, the family of Mrs. Chandler, a woman of 88 with lung cancer that has metastasized into her bones, insists on every possible measure being taken to keep her alive, despite the futility of these measures and the intractability of Mrs. Chandler’s pain. Fearful of losing their mother, their fear explodes in anger and contradictory demands, severely trying the patience of the medical staff. The daughter insists that Mrs. Chandler was asked in the emergency room whether she wanted to be resuscitated and said yes. But whether anyone—patient or family—is fully prepared for what this meant in terms of her care, it was increasingly uncertain. Eventually, the family has to let go, to accept, as her son expresses it, “We have done all we can do. We want to let her rest.”

This story, although a painful one for Dr. Van Scoy to share, offers an important object lesson for others in similar situations.

Reports Richard Kedanis, Executive Director, part-owner and volunteer of Xenia Hospice and Palliative Care, “I was pained by the early death of my mother.  She didn’t have an advanced directive and aggressive means were employed to attempt to save her life.  I was very close to my mother and I didn’t know about [her] options, nor about bereavement support at that time. I would have been better informed and prepared had I read DNR in my early twenties, especially the story in Chapter 2 [Mrs. Chandler’s story].”

The underlying question to the reader, in all of these stories is one that many of us prefer to push aside: “Are you prepared for the decisions that you or loved ones will make on your behalf at the end of your life?” Obviously, we do not want to think of our lives ending or of how to cope or help loved ones cope with that possibility. We want to think about picking up groceries on the way home. We want to think about dinner tonight, music, books we enjoyed, the party on Friday, the colleague who snubbed us in the hallway—or the one who smiled significantly at us in the coffee shop. This is understandable. We are in the midst of life and feel its powerful pull.

Yet the question awaits.

And it may not wait until our old age.

As Terry Sandman, Palliative Care Coordinator at Crozer-Chester Medical Center and Springfield Hospital explains, “An unexpected crisis can be the worst time to discover that you never had those discussions about life threatening/ life limiting illnesses and what decisions you would make, such as how would you want to spend your time if it is limited—on a vent in the ICU or with loved ones at home, in a hospice house where the ultimate focus is comfort and quality of life. It is a personal choice. Some patients choose to fight till the very end no matter what the burden and that is okay as long as they understand the burdens and benefits of continued aggressive treatment.”

Dr. Van Scoy, in particular, recommends that people define for themselves and for family what constitutes a “meaningful recovery,” whether it is simply consciousness and the ability to communicate with loved ones or whether it means one’s full level of activity. What compromises can we accept? There is no right or wrong answer to these questions, but whatever the answer is, it helps to discuss it with loved ones while reasonably healthy and clear-minded.

Dr. Robert Promisloff, Pulmonary/Critical Care physician and chair of the Ethics committee at Hahnemann University Hospital, agrees that these decisions are best made when someone is not “critically ill” and when the doctor can discuss the choices “directly with the patient,” rather than having to guess what he or she might have wanted. Both Dr. Van Scoy and Dr. Promisloff noted that they had discussed the issues with family members who made their wishes clear in advance. Both agree that it is important to have at least a verbal statement if not a written one saying what a loved one wants.

Although—or perhaps, more precisely, because—life spans have increased, and greater medical resources are available to prolong life, it is all the more important to have plans in place for, as Dr. Van Scoy puts it, “what you’re willing to fight for and what you’re willing to lose” in quality of life.

“I spend half my day in the critical care unit,” observes Dr. Promisloff, and “a high percentage of patients are at the end of their lives. Hopefully we get some people better, but many are near the end and don’t have living wills.” He sees Dr. Van Scoy’s book as a valuable resource in its accessibility.

Through “storytelling,” it brings out “the need for discussing issues we see every day,” he explains. “People are living longer, have more options. They can live into their nineties, receive transplants—but eventually the end will come.” Last Wish brings up “different aspects of end-of-life care, the need to be more aware of patients and how to care for them.”

For example, cancer treatment need not necessarily involve receiving chemotherapy. “Sometimes not doing something can be better,” Dr. Promisloff pointed out. Indeed, for end-stage cancer, “palliative care can help a patient live longer than with chemotherapy.”

Of course, having an advance directive is not a guarantee that one’s instructions will be followed, a point Dr. Van Scoy raises in the resource section at the end of Last Wish.  The DNR order may be misunderstood. She cites an example of resuscitating a patient, then learning that he had an advance directive stating that he didn’t want CPR. Upset, she shared with her mentor what happened. The mentor, however, pointed out that the check-off list on which the patient had indicated his wish for no CPR was preceded by a statement limiting the circumstances under which his directive was to be observed. As it turned out, the patient recovered.

Despite this, however, there is general agreement that knowing a patient’s wishes ahead of time can help doctors make key decisions in end-of-life care.  And it is equally important for patients to be informed of their options ahead of time, including financial matters. As Kedanis advises, “Research all healthcare options and weigh the pros and cons of each choice.  Speak with your physician or other healthcare providers (including a medical social worker).  Complete an advanced directive and make sure that all of your family and caregivers are informed about your choice and wishes.  Communicate your needs and expectations to your family, caregivers and hospice team, as appropriate.  Speak with an estate attorney about related documentation as well as estate planning to protect family assets from spending down requirements.  And for the terminally ill, know that an early referral and early election of hospice services increases access to hospice care and gives the patient the maximum amount of benefit.” 

Perhaps most important lesson in all of this is that with all the tools of saving lives now available to modern medicine, the questions we need to ask are those that philosophers posed from the time they first picked up pens: What do we consider a meaningful life? What makes life worth living? What would we not want to do without? Often, in asking these questions, patients seek spiritual answers. Sandman mentions the importance of a Palliative Care Team supporting patients “emotionally and spiritually” as well as physically. For some, having access to a clergy member can help them face death more peacefully. People tend to do better, says Dr. Promisloff, “if they have faith,” and are able to see “something beyond their own life.” Again, of course, as with definitions of what makes for quality of life, faith is an individual matter, and is not something that can be forced. Ultimately, says Dr. Van Scoy, “The best we can do is listen and provide religious counseling when necessary.”

To further simplify: “The best we can do is listen.” What we learn comes to life in the stories we read in Last Wish and hear from our loved ones—and those we tell ourselves about our lives.