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Editor's Note: I first met Laura Schmidt in the late 1990s, when I established "Exchange," for ABCD, and Laura edited newsletters for Last Acts and others. Laura has been an ABCD member, and one of our cherished volunteers. Over time, we became good friends who shared interests that went beyond end-of-life issues. As writers, we simply liked to share good writing and funny stories. The following tale includes good writing, but there is nothing fun in the news Laura received this summer. ABCD has asked her to chronicle her experiences with hospice and end-of-life professionals so that we might learn from her journey, and learn where change is still needed.-Janice Lynch Schuster
In my years as a reporter covering end-of-life issues for health care professionals, I sometimes wondered how I would react if told that my life would soon end. What would I do? Say? Want from my husband and friends? That wondering changed to a terrible reality last July, when I was told I had metastatic pancreatic cancer.
I still cannot quite believe how quickly I went from the land of the living, to the land of the dying, - or at least to the land of living well despite fatal illness. True, I had written about the land often enough to think I knew it-the truth is, none of us truly knows it until we are permanent residents.
Up to the moment of my diagnosis, I was a seemingly healthy midlife woman. My yearly physical showed that I was in good shape for a 50-year-old woman, and my husband, Joe, and I had begun talking about retirement plans.
Everything changed on a Friday afternoon in June when I went for a massage to ease the stress I'd been feeling from graduate school work. The next day, I woke covered in bruises from my waist to my kneecaps; pain radiated down my back. Fearing that a visit to the Emergency Room would result in questions of domestic violence-what else could cause such terrible bruising?!-- I waited out the weekend to see my internist. During that visit, my internist, Dr. Meyer, was appalled at the sight, and prescribed muscle relaxers and pain killers.
"You'll be fine in a week," he said.
One week later, the bruises had faded, but the pain remained undiminished. For the next three Mondays, I went to Dr. Meyer, anxious to find the cause of the pain. An MRI found no sign of a ruptured disc. There was evidence of a damaged sciatic nerve.
Finally, with the long July 4 weekend approaching, Dr. Meyer prescribed steroids to lessen the inflammation. Instead of lessening my pain, the pills made it worse. That Monday-ironically my 51 birthday-Dr. Meyer ordered a CAT scan to check on my gallbladder as a possible culprit for the pain. The CAT scan was at 7:30 a.m. and I was home by 8:30. Joe had already left for work when Dr. Meyer's office called, asking that I come to his office that afternoon.
"Be sure to bring your husband," the receptionist said.
At the office, we were taken straight to the examination room. Dr. Meyer came in, CAT scan films in hand.
"The good news is that it isn't your gallbladder," he began, "but there is plenty of bad news. You have a tumor in the tail of your pancreas and the cancer has already spread to your liver and lung."
I sat in silent shock as Joe began asking a million questions. Having been trained as a Cancer Information Specialist by the National Cancer Institute, I didn't have to ask any questions. I knew what Dr. Meyer was telling me-that I had between 6 and 12 months to live. Finally, I turned to Dr. Meyer and looked him straight in the eye and asked, "Are you telling me I'm dying?" In tears, Dr. Meyer nodded "yes." I began crying, and saying, "Oh my God, Oh my God." Joe was crying so hard he slipped off the examining table, where he had been sitting next to me, and Dr. Meyer, still crying, reached for our hands. After a minute, I announced I had to leave, that I was too overwhelmed, and Dr. Meyer got up and opened the door. He didn't try to stop us or to talk more about the cancer. He let us go.
Once we got over the initial shock of the diagnosis, my husband and I discussed who was going to be told. Because of my professional experience, and my master's degree studies in thanatology, I am comfortable talking about death-but talking about my own would be difficult. I wasn't sure how everyone else would react. Joe and I agreed that it would be hard to hide. After all, my body was going to go through major changes due to chemotherapy, and our everyday behaviors would make the cancer's presence even more apparent. We decided to tell everyone what we were going through and let the chips fall where they may. Again, my work experience told me that some people would gather round and embrace me with friendship, and that some would find it too hard to see me.
Instead, what I learned in the last three months is that people are willing, sometimes eager, to talk about death and dying. For example, after stopping by my vet's, a young woman came across the parking lot, calling for me. She is the youngest person at the office. She came to me, embraced me, and started to cry. We stood there for about two minutes until she turned to go back to work. Not one word was said during this entire time, but I felt her compassion, support and love.
At the grocery store, I ran into a favorite cashier; as we talked, I mentioned my cancer. She too hugged me, and then went on to tell me about her 29-year-old brother's death from bone cancer the year before. Our conversation became so emotional that she took a break, and we sat on a bench outside the store for half an hour talking about death, dying and grief. At the end of our talk, she said that was the first time since his death that she had talked about him and she felt much better. I felt better too from having had an honest talk with someone else who had faced tragic loss.
I have had conversations where people have been able to move from the polite surface of things, to the hard reality. One friend said "I don't know if this is out of line or not, but is chemo really as bad as they say?" That question gave the opening to everyone in the room to talk not only about my cancer and what Joe and I were going through, to think about and map out his or her own preferences in case of severe illness. When everyone got up to leave, my friend pulled me aside. "I face death every, day, just like you," he said. "I have such a bad heart that the doctor says that each day is a gift. But my family won't let me talk about my fears and anxiety. This discussion really helped me."
As open as individuals have been talking to me about my dying, healthcare professionals have been reluctant to address the issue. For example, one therapist I went to for help with anxiety caused by my diagnosis said that I was thinking of myself too much as a "dying person," and that this was not healthy.
"You should be looking at yourself as living human being and plan your life accordingly," she told me. I reminded her that the doctors have given me from 6 to 12 months to live and that my cancer is so extensive that it can't be cured, only controlled. She told me I was being too negative in my thinking and that we would address this in the next session. I never went back.
My oncologist is equally reluctant to talk about the death aspect of my disease. Although we admire doctors for being so dedicated to long life and good health, there is a point when, for some patients, doctors must accept the inevitable and open the discussion to what happens near the end of life. When I die in the next few months, it will not be because my doctor failed. It will be because my body has failed.
Major strides have been made in the past few years in addressing end-of-life concerns; there is still a void in "beginning the conversation" about death and dying on the national level. Despite the hard work of organizations such as Americans for Better Care of the Dying, our nation's policymakers, healthcare providers and organizations, and corporate leaders are still denying death as a natural and unavoidable part of life, and this reluctance affects every level of society, not just for the patient on the exam table, but also for the way we design and fund programs that serve the dying.
People who want to start real change can do so by visiting websites of organizations devoted to these issues. Americans for Better Care of the Dying (www.abcd-caring.org) is one good resource for those interested in influencing federal policy. The Institute for Health Care Improvement (www.ihi.org) in concert with The Washington Home Center for Palliative Care Studies (www.medicaring.org) is starting another National Quality Improvement Collaborative to help organizations improve practices. For internists who need ideas and practice in communicating with dying patients, I recommend 20 suggestions put forth by Donald M. Berwick, M.D. You can read these at: http://abcd-caring.org/tools/intern.htm
Here are a few conversation starters from Dr. Berwick that I really like, and that I wish I might hear along the way in my journey with this frightening illness, the uncertainty before me, and the amazing bravery and love of my friends and family.
Questions to ask:
To identify opportunities to share information with patients and caregivers, ask each patient who is "sick enough to die:" "Tell me what you know about your disease." Then: "Tell me what you know about what other people go through with this disease." "What do you think will happen to you?" "What worries you?"
To understand your patients' experience, ask (1) "What do you hope for, as you live with this condition," (2) "What do you fear?," (3) It is usually hard to know when death is close. If you were to die soon, what would be left undone in your life?," and (4) "How are things going for you and your family?"
Don't be afraid of what you'll hear, or worry that you might not know what to say. A listening presence can be so comforting. And the more you do this, the more natural it will seem, not only to you, but to your patients, who will appreciate your compassion and your care.
