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Coming To The Crossroads of the Soul: Drawing The Line In The Sand When Enough Is Enough!
In an article entitled, "Planning for the End of Life," which appeared in the November 2000 issue of the British medical journal, The Lancet, it says that because "people die in severe pain," and that "two-thirds of health-care professionals feel that the treatments they offer are overly burdensome," quality-of-life issues should receive greater attention than they have by the medical profession in general. And in a U.S. News & World Report article entitled, "A Lesson Before Dying: Med Schools Tackle End-Of-Life Issues," it says that dying in American hospitals too often involves "extreme pain, poor communication between physicians and patients, and misunderstanding about how patients prefer to die." No wonder we fear death so much. However, even when we arrive at the crossroad of treatment failure and inevitable death, we can still "call the shots" and soulfully triumph over this final phase of our illness.
Soul Talk: What My Patients Tell Me
In talking with my own clients, both in the weekly cancer group, and in my two weekly bereavement groups, I hear several concerns about dying. The first concern has to do with dying a long and drawn out death or dying in pain. The second concern is dying alone or dying in a strange place without getting the chance to saying good-bye to important people or dying without accomplishing an important but unfinished task. This is followed by such concerns at not having a Living Will or DNR (Do Not Resuscitate) order respected by family members or the doctor not being able to recognize that it's time to switch from the heroics of "curative" care (involving ventilators, respirators, IV's, feeding tubes and the like) to the compassionate use of "palliative" care, concentrating on quality of life and pain relief. These issues make up the crossroads for our soul when we face a terminal prognosis.
Pain: The Debilitating Nemesis
Here's the bad news: Seventy to 90% of those with "advanced cancer" have chronic pain. Now, here's the good news: Adequate pain relief CAN be achieved 90% of the time. Oncologists are now aware of several different "kinds" of cancer pain. They include what's called, "Nociceptive Pain," which is pain that is caused by an injury to bodily tissue. One example of nociceptive pain is what's known as the Tumor-Related Nociceptive Pain Syndrome. This is where the person with cancer experiences persistent bodily pain due to tumor invasion into the bone, joint, muscle or connective tissue linking vital organs.
The most common treatment for cancer pain includes radiation and chemotherapy, which are commonly used for pain control when breast cancer, lung cancer or prostate cancer has spread to the bone. In addition to palliative or pain-controlling chemotherapy or radiation, there is also drug therapy that consists of using narcotics, anti-inflammatory medications, analgesic medications, and/or anti-depressants.
For example, by using such narcotics as morphine, oxycodone, Hydromorphone, methadone, Levorphanol or Fentanyl, your chronic pain can be relieved most of the time during this crucial part of your journey with cancer. If these drugs alone don't relieve your pain, they then can be mixed with other drugs to make a pain relieving "cocktail." Examples of other drugs that are used in pain control include steroids, antidepressants, anticonvulsants, and non-steroidal anti-inflammatory drugs (NSAIDs). The more commonly used NSAIDs for pain include: Acetaminophen, Etodolac (which is used for post-operative pain and traumatic injury), Mefenamic acid (which is used for moderate pain), Naproxen (which is used for acute traumatic injury, pain associated with migraine headaches, and post-operative pain), and Sulindac (which is used for bursitis and tendonitis). As one physician, writing in a medical journal, recently said, "Cancer pain represents one of the multiple facets of a progressive illness that may undermine the quality of life and profoundly burden the family. Pain management is essential in a broader perspective of palliative care, which aims to maintain quality of life throughout the course of disease and manage the complex problems that can occur as patients approach the end of life…"
The Care of the Soul: The Coming of Age of Palliative Care
The good news is that the tide is finally turning in the medical profession with respect to recognizing the soulful importance of going from "cure" to "care," when the treatments no longer work and the cancer has spread to vital organs. For example, in an American Family Physician article entitled, "Withholding and Withdrawing Life-Sustaining Treatment," a physician writes that it IS appropriate for a physician to say, "Your mother is dying. We can't change that, but we can change the way that she dies. In my opinion, inserting a feeding tube into your mother's stomach may increase the number of days she is alive, but I think she would try to pull it out, and the quality of her remaining days would be worse. I wouldn't do it."
In another very important article that reflects the soulful paradigm shift in the field of medicine today, is entitled, "Ten Commandments For The Care of Terminally Ill Patients," written by Dr. James R. Whitten. He lists ten "commandments" that every physician should follow when treating a person who is entering their "final season of survival." The physician recommendations include:
1. Be a straight shooter: The physician should use the truth when it is requested and in the amount it is requested to assure the optimal sense of well-being under the circumstances.
2. Be empathetic: Patients feel better when you show them that you are aware of their emotional experiences.
3. Ask about consultations: Patients and their families should be asked about the use of additional sub-specialties, such as medical, psychiatric, or surgical consultations.
4. Do not abandon: One of the most distressing situations for the patient is for the primary physician to "sign off" on the case, leaving the care to a new and unfamiliar physician.
5. Maintain a regular routine of hospital calls: Keeping up the frequency and duration of the visits will increase your understanding of the patient, the family and yourself.
6. Obtain support from colleagues and family: There are many causes of burnout in those who care for the terminally ill. Also, it goes without saying that physicians frequently need support or possibly personal counseling with a mental health professional.
7. Communicate with the patient's family: Family members can be a great source of information.
8. Preserve the humanness of the patient: It is essential to maintain the idea that "quality of life" is an important issue even for patients in whom a cure is no longer expected.
9. Be concerned about where the patient dies: Some patients and their families will want to spend this time in other places, such as in their home. Then, the availability of urgent care, financial help for the patient from local charities, pain control and administration of adequate amounts of medication become real issues. Physicians must be aware of what support is available in their communities.
10. And, Preserve hope: Do not use false evaluations in the response to the inevitable question of "How long do I have?" Usually what the patient wants is someone to listen to them in an objective manner. Share their hope and do not paint the picture as completely hopeless or emotionally abandon the patient with words such as "always" or "never."
Soul Talk: Recommendations For the Soul at Transition
Entering the terminal phase of your disease is one very clear example of a nasty, scary and traumatic period of your journey with cancer. And as such, I recommend that you use the SANITYMatrix™ and the Healing Narrative to help address these scary feelings and traumatic assaults on you and your inner soul. To do this, I have included a blank Transformational Healing Grid at the end of this chapter.
In addition, regarding your own End-Of-Life issues, I encourage you to make out a living will now and give family members and your physician a copy of it while making it clear, that you have retained an attorney to legally enforce your wishes even if it means going to court. It's time to be soulfully empowered—to live your life to the very fullest—even if that means to the very end.
I also recommend that you choose where (home, summer house, get away cottage, etc.) you want to spend your remaining time and to set that place up exactly as you want it (music, or no music; bed in the living room or a futon instead; bright lighting or more subdued lighting, etc.) while also choosing who you want to take turns being with you during your final days and moments (spouse, partner, parent(s), siblings, friends, co-workers, nurses, chaplain, etc.) You can choose how you live as well as how you die.
In addition to these recommendations, I also recommend that you begin to explicitly sort out your religious or philosophical beliefs regarding life after death before your final days, and make it known, both verbally and in writing, how you want your body to be situated after you pass away including, what if any, kind of service you want after you are gone.
And finally, my last tip, is for you to make a list of all the people you want to say "good-bye" to, jotting down how you want to do this and when you want to do this, as well as designating whatever charities you wish to make a donation to in you or your family's name.
By actively preparing to face this crossroad by being armed with a mixture of pain relieving drugs along with deciding how, when, where and who you wish to pass into the next realm of existence with, you will once again, take control of the lack of control, and insure that you will NOT die a lonely, painful, drawn out death, in a strange place, with strange people, with your wishes for no heroic life-saving measures, being ignored. It is again, "doing it your way!"
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