The International Peace Meditation is held during the 24 hours of the first Sunday of every month. Each month, a meditation on a topic of spiritual significance is provided for reflection. We hope you will join us to pray/meditate and reflect.
This month, the subject is challenging. It has been the most difficult one for me to write because it reflects my personal experience. It may be difficult for you to read, but the subject is timely and important. Please read it as you can. It is provocative; its message is essential. It does not provide answers, but asks the questions that each person must, at some time, consider.
At the time of this meditation, let’s remember all those who provide care for others, including medical personnel as well as family and friends.
“A Time to Live; A Time to Die”
November 2, 2003–Life and death issues surround us daily. Whether we work in emergency rescue, medicine, law, or as parents, lovers, or caretakers, we face the daily struggle of life, and of death.
The issue of when life begins, and when it ends, will take on enormous focus with the continuing expansion of technology. The debate over the origin of life is continuous. The repercussions we experience when we make life and death decisions sometimes haunt us. We think we know what is best until we are faced with the ultimate decisions. And we must believe in our choices, or they may destroy us with remorse.
When I was very young, I thought life began at birth. What led up to that moment of birth was mystery. I couldn’t see the development taking place. It seemed logical that life began at the first breath when a child was born. That was an easy concept. But life isn’t easy, and the more we learn and develop, the more ambiguous it may seem.
As I got older, and saw the deaths of the elders of our family, I thought that death was inevitable and never questioned why, or when, or if. It simply was. My faith was simple: God decides. Decisions of “prolonging” life were not in my consciousness. God ruled. It was simple.
As I matured and later became pregnant, and felt the movement of something living inside me, that perception of the beginning of life changed. The little punch in the ribs or abdomen, from the inside of my body, caused emotions to emerge that were beyond anything I had experienced. It seemed as if I loved with a passion this little something inside of me, which I had never seen. I was committed to doing all I could to help it develop safely. I looked forward to its appearance. I planned for where it would sleep, be changed, and eat. It became a major focus of my life. I had thought that life began at birth. Now, I had another sense of the mystery that made me believe that life began long before birth.
As I continued to mature, I experienced loss of loved ones. Sometimes that loss was catastrophic through accidents or illnesses that robbed each one of the anticipated remaining years of life. When I was age 28, I lost two high school friends to Leukemia. I became depressed and frightened. This wasn’t supposed to happen. If it could happen to them, it could happen to me, and to those I loved. This completely challenged my views. I had to integrate this into my perception of life. I had to find meaning. I had to find solace. I needed answers which no one could give me.
I’m telling this story because I suspect yours is not much different. At different points in your development, your perceptions and beliefs had to change because they no longer worked. Life wasn’t magic anymore. The order expected was challenged, and life assumptions had to be reorganized. Faith may have been challenged. Magic thinking disappeared. And, after a time of searching, some answers came. Some. Not all. Just some.
When my second and third children were born, there were life-threatening complications facing them. I remember sitting next to the bed of my baby daughter, and giving her over to God. I had realized that change would occur, and I needed to surrender my desire for the outcome. It was the most difficult thing that I have ever done. She immediately began responding positively. The crisis passed only to be followed by another when she could not tolerate any sustenance, and I had to “relactate” after she was eight weeks old. I learned much from that experience. I learned never to think it might not work. It had to. I learned that you truly know who your friends are when life hits you in the gut. I learned that people I’d never met, and never would meet, would help. That help comes from unexplained sources. The people who came to our rescue seemed more like my childhood images of angels than of real day-to-day people. I learned that people come when you need them. And then they go on. But, the most important thing is that at that moment of crisis, they are there.
When my marriage was failing, and all my beliefs were crumbling simultaneously, I learned that we can find strength when everything else seems to elude us. I remember that our marriage was on the Church prayer vigil, and so I expected that we would be OK. When the necessary healing didn’t come, my faith went through another challenge. I had thought that prayer would heal. What I didn’t realize was that faith healed the individuals, but not the relationship. We had to heal separately. I didn’t realize that sometimes the answer is “no.” I lost my magic faith, and had to replace it with a faith that deals with reality differently. A faith that says, “We will not change the world for you. We will change you to meet the world.” A paradigm shift from all of my previous learning.
The next life challenge was my Mother’s illness. At age 69, my Mother was diagnosed with lung cancer. I was busy with my career and children, and did not really understand the implications. Mother had been diagnosed very early, and surgery was performed. She was well until five years later when another cancer was diagnosed in her other lung, supposedly unrelated to the first. Another surgery and radiation. In the meantime, osteoporosis had caused a broken hip, and another surgery had ensued. Life was not gentle for her. Yet she suffered quietly and with great dignity.
In 1997 she entered the hospital in a weakened condition, never to leave in the next 23 months except for three weeks on life support at home. It was a painful and growing time. As her medical power of attorney for much of the later period, I was face to face with the most difficult of decisions. But underlying all of that was still the question, “When does life begin”? And, “When does it end? Who decides? God, or some Higher Power, or me? What moment to moment decisions are right?
Those who weren’t personally involved were often free with their views. Some even insisted their views were right. This experience did not fit my previous perception of life support. I had thought that life support became an issue when the brain was dead. My Mother’s brain was as alive as mine! Although she couldn’t talk, and I had to learn to read her lips, her thoughts were clear. All the while I received sometimes not so subtle pressure to turn off her ventilator. I would look at her and wonder what she really wanted. Then I would see a huge smile, especially when my Dad walked into the room. She was trapped in a body that could not return to health, and she was not ready to die.
I still struggle with those decisions. I won’t tell you that some magic answer came to me or that lightening struck with all the right answers. It was a moment-to-moment decision with each medical intervention that was offered. We chose to fight. At least, I chose to fight because she appeared to fight. After multiple pneumonias that ordinarily might have resulted in death, she would come out of a sleep-like state, open her eyes, and smile. Once she said to me, “Did I die?” I said, “No, Mama.” I wonder what she experienced that was such that she didn’t distinguish life on earth from possibly the next life. Were they similar? Did she seem to float between life and the next stage? Once when she appeared to be sleeping, she seemed to be answering questions. Yet I was silent, and no one else was there. Was she making her own life and death decisions? I don’t know, but I think perhaps she was. She didn’t seem to be ready to die.
She was on artificial feeding for two years, and a ventilator to breathe for her for 18 months. But her mind was very much alive. What was even stranger was that the neurologists were telling me about all the brain atrophy caused by her severe seizure disorder, even saying that she had the mind of a two year old. Well, that was surely nonsense! Their problem was that they could not communicate with her as I could, and they made inaccurate assumptions. In one case a neurologist talked to me at length about turning off her life support. Was he right? I still don’t think so. However, I regret all her suffering. But, I refused to turn off her life support. Since that time I have learned that discontinuing life supports happens frequently because patients don’t have insurance to pay for continued support. I learned that in one state at least, people over the age of 16 are not entitled to life support without insurance. Think of the implications! Think of what is actually occurring that you and I never see!
I learned that the physical therapy required to wean one off life support, available through a nationally known provider, is not given to people without insurance. Getting off ventilator support is a process that may require professional assistance. Without it, many people are faced with going home on continued life support, or stopping it with its inevitable consequences. Had she not had insurance, my Mother would not have been eligible for the services she received, (although under the threat of suing the insurance company!), and the story would have been quite different.
Not one nursing home in the entire state would take a patient on a ventilator. Each time the hospital would try to discharge Mother, there was no place to go. I sought help from local politicians and was ignored. One wonderful person with power intervened in our personal situation. I wonder how the other politicians live with themselves. Do they go home and put their heads in the sand? Do their campaign contributions come from insurance companies? They may think they will never have to face this situation. Will it take a personal experience, like we had, to wake them up to the ultimate suffering of so many? Will the realities of intensive care rooms ever come to light? Will the country ever wake up and say, “Enough!” Everyone deserves to live. Everyone deserves insurance. Or will we continue the class systems that provide only for some?
Ask yourself what “quality of life” means. Did you know that insurance companies are involved with this definition? Did you know that medical ethics is involved with this also? Aren’t insurance companies and ethics committees strange companions? Doesn’t that make you wonder? Shouldn’t they be separate? Do you want insurance companies making life and death decisions for your family? And do you want it cloaked in pretty words like “quality of life”?
Matters of life and death are matters. . .of life. . .and of death. There is no way around that. These decisions will have to be faced. And when they are, faith takes on new challenges. What seemed obvious, was not. What seemed simple, was not. What seemed matter-of-course, was not.
The difficult questions of when life begins and when it ends, our role in each, and the resulting decisions we make, are more than science. They are also of faith. I remember an intern voicing objections to me when my Mother was on life support. He believed that God didn’t want anything artificial inside the body. He didn’t object to other supports like glasses and hearing aides. He just didn’t believe that “life support” was right in God’s eyes.
I remember telling him that at some point everything he tried to do for Mother would fail. He quickly agreed. And then I told him that, until that time, his job was to do everything he could! It was obvious my response was not consistent with the prevailing thinking in that hospital, in that state, and at that time. I’m sure, since our family knew and loved the wonderful doctors and nurses and aides there, and they loved us, that widely accepted views were challenged. I remember nurses quietly cheering me on. I remember how some even appeared to admire my feistiness and willingness to challenge doctors and hospital administrators. It took a personal toll, as all battles do. But I’d pay the price all over again!
I don’t know the answers. When does life begin? When is abortion OK? When is it not? When is it right to discontinue life support? When is it not? All I know is that the questions must continue. The answers must not be influenced by others’ personal gain. Inner guidance for decision-making must be consulted, or we may at times be at the mercy of others whose agendas are questionable.
And the decisions we make must be ones we can live with. We must realize that most of the decisions won’t be obvious. This is a huge gray area, and it provides a painful challenge to our courage and our faith.
I hope I made the right decisions for my Mother. I still wonder. I review my decisions, and most of the time I still think they were the right ones. I know others who think about the decisions they made also. But I do know that each of us made our decisions with the best interests of our loved ones in mind, and perhaps that is the ultimate requirement. However, the inequities and injustices I saw through the entire process make me realize that we each need to look closely at what is actually happening.
Are you informed about how decisions are made regarding ending life, whether at the beginning, or later? Do you know what your hospital practices, or what it teaches its students if it is a teaching hospital? Have you talked with the Ethics division of your hospital? Are you sure that they are removed from the interests of the insurance companies?
Do you know what services are available for those who choose life support? Are you aware that services vary greatly from state to state? Do you know that legislators may avoid this discussion? When we were looking for services and found that not one nursing home in the state would accept a patient on a ventilator, we, like others before us, would have had to go to another state for services. I asked the Chair of the Health Committee of the State Legislature if I could speak to the Committee, and let them know of our dilemma, and therefore the State’s dilemma. After an initial positive reaction, my phone calls were not returned, and I was never allowed to speak to them. Their citizens are dying without services, and they don’t want to know!
The state of Massachusetts had innovative services for those on ventilators. At one facility I visited, I was unexpectedly greeted, after 5:00 p. m., with a large team of healthcare workers who would have taken care of my Mother had my parents wanted to leave their home state. It can be done! One patient was in a wheel chair, and appeared to be the leader of the other patients on vents. It was a beautiful sight. She was not depressed. She was their leader. She told me that she never wanted to return home. She appeared well taken care of and happy. She was an excellent spokesperson, even though she spoke with the hoarseness of one on a ventilator.
Sometimes we end life because we feel we have no other options. Sometimes we act hastily in a time of crisis. Sometimes we think that it’s just easier that way. But if we have options, and if we know what they are, we may be able to make more enlightened decisions. These are decisions no one wants to face, but most will have to. It’s worth thinking about and exploring. It’s worth demanding services for those who need them. It’s worth challenging the systems that tell us it can’t be done. That it’s too expensive. Why do patients on ventilators have to pay hundreds of dollars per day? Why can ventilators only be rented in some places where medical supply companies require service contracts? Are they more expensive because of low demand? Is there low demand because people don’t know that a patient may benefit from short term, or even long term, use? Why aren’t we being educated to the benefits as well as the challenges of life support options?
I can say as I sit at a computer that I would never want these services. But, lying in a hospital bed with life support, or death, as my only options, I might feel differently. Be careful about medical proxy forms that make your decisions final. Instead, leave the decisions, which are not black and white and depend on unique circumstances, in the hands of those who love you and want the best for you. Tell them, as closely as you can, what you want. And then have a medical power of attorney legally designated so that the decision-making is not taken from you and your loved ones.
Life is precious. Even when it’s horribly challenging, it’s precious. I learned to be grateful for moments, not years. I learned the preciousness of closeness. My Mother had the greatest courage I have ever witnessed. Courage is going off to war, but it is also choosing to face challenges, and thrive. Empowerment means taking on power. Mother taught us that in the least empowering of circumstances, she was powerful. Her spirit never died.
The human spirit is testimony to something more. It soars in the worst of times. It rises to the most difficult of challenges. It can lead in battle, but it can fail in apathy. It thrives on challenge; it abhors defeat. It leads quietly in death, but with an infinite power. It is a part of the great “I am”.
Thank you for taking the time to read this difficult meditation. As you reflect, consider how you can learn more, and teach others, about the impact and importance of life-prolonging technology. Don’t be afraid to learn about the benefits, as well as the challenges. Promote research that allows more patient freedom and mobility during their use. And, if you decide that this technology should be available to all who would want it, please insist to those in power that this be an entitlement. Money is not the real problem. Lack of education, and willingness to face and resolve the issues, are the real problems. All forms of healthcare should be considered an entitlement.
We created the systems that provide or deny healthcare; and only we can change them. Life has been given to us. It is up to us to protect it.
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