Abstract: When we first started CA Care, some critics say we are giving the dying false hope. Over the 16 years that CA Care is around, we are happy to say that many miracles did happen at CA Care. Make no mistake, we are under no illusion. Neither are we a religious fanatic. Over the years we always call a spade a spade and we face reality without any pretence. Death is a reality – it can happen to you or me, anytime – irrespective of whether you get cancer or not.
Chris K. H. Teo
CA Care, 5 Lebuhraya Gelugor, 11600 Penang, Malaysia.
Over the past weeks many things happened that prompted me to write this article about Death. To many people, especially those with loved ones who have cancer, to read or talk about death is probably the last thing that they ever want to do. The subject about death is a taboo – they want to only hear how to cure their incurable cancer.
- A father wanted us to help his 3-year-old son who had neuroblastoma, Stage 3. After surgery the boy received three cycles of chemotherapy. The side effects were so severe that the father wanted to stop medical treatment altogether.
- A son from Eastern Europe wrote about his 61-year-old father who had lung cancer that has spread his liver, lymph nodes and bones. He wrote, I was directed to you by a Malaysian colleague of mine whose relatives you have helped. Please don’t turn us away.
- A lady from Indonesia wrote, I want to ask the best hospital for cancer in Penang. My problem is cancer in my right breast. Record from Dharmais (Cancer Hospital)since 4 July 2011 was to operation. I don’t want. I’m very afraid. What shall I do? Please I’m in trauma because my mother passed away with cancer in 1972. I have one son. Please help me.
- A young lady wrote, I’m planning to go to your center in Penang regarding my sickness. My leukemia relapsed very recently and my doctor told me I probably have less than six months to live if I choose not to have anymore chemotherapy. And he said further chemotherapy can only buy me some time (probably two additional months) unless I have bone marrow transplant.
I jokingly tell patients – we are your last one stop. The cases that come to us are usually beyond us to cure. We trust and pray that God will do the miracle – this is His decision not ours. This is our motto – Our hands but God heals. When we first started CA Care, some critics say we are giving the dying false hope. Over the 16 years that CA Care is around, we are happy to say that many miracles did happen at CA Care. Make no mistake, we are under no illusion. Neither are we a religious fanatic. Over the years we always call a spade a spade and we face reality without any pretence. Death is a reality – it can happen to you or me, anytime – irrespective of whether you get cancer or not. Perhaps with cancer, the journey to the grave seems somewhat shorter!
Our struggle and responsibility is obviously beyond us to bear. We derive much comfort in Reinhold Neibuhr’s often quoted prayer,
God grant us the serenity to accept things we cannot change,
Courage to change the things we can,
And the wisdom to know the difference.
For those who are more conscious, perhaps they might have read the small poster put up at our centre. This is what it says,
“No one lives forever,
Therefore, death is not the issue.
Death is not a failure,
Not choosing to take on the challenge of Life is.
Someday, when you’re tired, bored and sore,
And you want to leave your body,
Your death will be a healing ~ Bernie Siegel, 1990.
On 6 October 2011, Steve Jobs — the genius of Apple Computer died of pancreatic cancer. I have never heard of his name before, in spite of his fame. My son probably did because he is an iPad and iPhone fan. This time I was a bit curious why a man so endowed with wealth could ever die of cancer? Is it because of lack of chemo-drug, good oncologist or good hospital? If this happened to a common person, we can always shift the blame to something like no proper medical care, or health care professionals who are not competent enough, etc. etc. But these excuses do not apply to Jobs.
As I surfed the net, I stumbled onto what Jobs said at the Stanford University commencement speech in 2005. Let me quote what he said that day.
“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away.”
What Jobs said impressed me indeed. These words came from him a year after being diagnosed with pancreatic cancer – a serious and incurable disease. He did realized from the very beginning how Nature operates. Like a big, growing tree – as new branches and leaves develop, the old branches and leaves will drop off to make way for the new. It is only in this way can the tree grow bigger and bigger.
Dr. Robin Kelly (in Healing ways – a doctor’s guide to healing) wrote, Fear of death is seen as a necessary part of modern medicine. All that can be perceived is loss and failure.
Those who have been spiritually awakened can appreciate the view that death is a natural process and is not a failure. Dr. Bernie Siegel (in Peace, Love & Healing) wrote, It is how we face up to our illnesses and how we take on the challenge of our mortality that determine whether we are successes or failures.
- Professor Raymond Tallis (in Hippocratic Oaths) wrote, Birth remains a one-way ticket to the grave. If disease does not destroy us, external events – accidents, war, natural disasters – will bring about our demise. The best we can hope for is harmonious decline.
- Dr. Bernie Siegel (in Peace, Love & Healing) said, It is important that we realize that we can never cure everything. We will never find … cures for all diseases. Dying can be a healing, ending a full, rich life for someone who is tired and sore and in need of rest.
Some of us live our lives as if life is forever. We hear of others die – relatives, friends and celebrities, but how many of us ever thought or believe that it could be our turn the next time?
- Writer William Saroyan humourously made this remark during the final hours of his life, I always knew that everyone dies, but I really thought there would be exception in my case.
- Dr. David Simon (in The Wisdom of Healing) wrote, As I board airplanes these days, I have the thought that every person who died in an airplane crash did not believe that his or her life is about to end. Although we all know there is the possibility of our dying on any given days, we are fairly certain it is NOT today.
- Professor Raymond Tallis (in Hippocratic Oaths) wrote, Death will always be premature – at least for the one who is dying. A late death is never late enough.
- Dr. Jerome Groopman of Harvard University (in How Doctors Think) wrote,Understandably, people want the home run. But often in oncology what we achieve is less than that. And the risk is, by going for the home run, you can strike out.
What Do We Really Know About Death?
The above question is posed by Dr. David Simon (in The Wisdom of Healing). He attempted to give his answers.
- Hamlet calls death “the undiscovered country” – and how can we describe a landscape that lies off the edges of our maps and beyond the reaches of our telescopes? For most of us, only one fact is certain about death … someday we will indeed die. Fear is that one certain fact – we know that we’re afraid of death. But again, what do we really fear from something we understand so little about? It’s certainly true that nobody know what’s going to happen. But whatever we may believe … each of us is going to face it alone – and I believe that this utterly solitary quality of the death experience is one of the most important sources of our fear.
- A second component of our fear of death derives, I think, from a sense of impending powerlessness. At the last moment… what if there are still a lot of things we want to do? Almost all of us live with, “If only I had …” or “ I should have …” or “I could have …”
- Just as a blazing fire can burn a log to a fine ash, by really experiencing everyday to the fullest we can eliminate regrets and residual guilt-ridden emotions from our consciousness. If we can fully process the events and relationships of our lives – really digest them – we can leave the table without hunger when the feast is finished.
Personal Life Experience – Do you really want to live?
David Tate (in Health, Hope and Healing) shared his healing journey with Hodgkin’s lymphoma. He wrote,
- A diagnosis of cancer can be scary, even terrifying … I woke up the next morning. After breakfast I went to my study where I could be alone. There in the quiet, after several minutes of internal silence, a question popped into my mind. “Do you really want to live?” It seemed like a strange question. Of course I wanted to live! I was afraid of dying, that was for sure. Afraid of the pain, the helplessness, the humiliation, the loneliness. “But do you really want to live? “The voice persisted … “Did I like being alive?” “Did I really enjoy living?”
- …. If I have to be honest there were a lot of reasons why life was no longer attractive to me. Did I dare admit that some part of me was disappointed? Could I admit that I might shirk my responsibility because, for reasons deep inside, I did not really want to live?
- So now the truth. I was disappointed with my life. I was disappointed with myself. Sure, I loved my wife and children. I wanted to live for them. But what about wanting to live for myself? Yes. And no. I was ambivalent about life.
- Depending upon the day, the mood, perhaps even the weather, I would have a different emotional message for my body. One day I would tell it I wanted to live; life was good, fun, enjoyable. Another day I was telling it I wanted to die; life was disappointing.
- I told myself. Now that you know the truth about yourself, what are you going to do about it? Change, change – I whispered. Reclaim you dreams – I told myself.
- A final thought – illness can be the catalyst for making deeply needed changes that results in a more meaningful and satisfying life. This has been my experience – illness is a path that can lead to inner riches.
Over these years, this is one lesson we learn – there is no cure of cancer! But there is healing and it is within you. There is no short cut. You have to work for it. Earn it the hard way. The most difficult thing to make patients understand is the need for them to change – change their perspectives about life, change their life style and habits, change their diet, change their attitude, etc. etc.
Many patients come to us with a one-track-mindset of wanting us to cure their cancer with minimal effort on their part and with the minimum of discomfort – never mind if they had chemotherapy before and suffered severely. Some even expect us to offer help via remote control and e-mail, in the comfort of their homes. If the words written by Tate above bring no deep meaning to your heart, your chances of winning over cancer is very remote indeed.
As I have told many patients. By talking to you for five minutes, my intuition will tell me whether I can help you or not. Similarly, by reading your emails to me and they way you write, I could roughly decipher to what extent I could help.
I often ask cancer patients – Do you love yourself? Of course the intelligent brain would say Yes, but I am too sure what your soul has to say. Another question would bring out the truth, Why don’t you drink your herbal tea? Answer: I have no time to boil it. How could you ever say you love yourself when you don’t even have time to take care of yourself? What do you do with all your time in this world? Of course you may have all your reasons – but where is your priority?
Take another example of a lady who wrote me these words. Her mom has lung cancer that has spread to her bones. She wrote, Per doctor’s advice, the lung cancer had spread to the pelvis in just a couple of weeks which accordingly is very fast. We will hand our mum in your good hands for us. Can we appeal for your help to assist our mum in the best way that you can please? Please do all possible to help us.
I replied, You are from Penang. If you want to take the herbs and take care of the diet, start now. Come and see me Sunday night and I shall prescribe the herbs.
Her response, By the way, we need not bring our mum over, will it be OK?
The above communication sent a chill into my spine! We can assist patients in need but to “hand over” the sick to us to care is beyond us. It has to be you and your brothers and sisters who should take the lead with our guidance. Then, another disappointment – she may have whatever reasons for not wanting to bring her mom to our centre. But is that the best thing to do? And she is from Penang. And she could bring her to the Hospital – why not to CA Care? Again, let me say, if patients or their care givers don’t understand that they have to change and work for their healings, our efforts to help others would be futile – a wasted effort.
- Dr. Bernie Siegel (in Peace, Love & Healing) wrote, No matter how sick we are or how close to death, as long as we are alive we have the chance to make something of our lives. Those who rise to the occasion will find that no matter what the outcome of the struggles, they have created something beautiful. For we die as we live.
- In another book of his (Love, Medicine & Miracles) Dr. Bernie Siegel wrote, You create your own opportunities out of the same raw materials from which other people create their defeats.
Death is always stalking us, and this is the driving force to live a life of meaning, ever alert to the miraculous opportunities available at every moment.
- There is an Indian saying, When you are born, you cried and the world rejoiced. Live your life in such a manner that when you die the world cries and you rejoice. To me, this is the secret of how we can triumph and give meaning and beauty to our own death. We leave this world with a sense of pride and accomplishment knowing the we have done our best to make it a slightly better place to live for those we leave behind.
In her 479-page book, Holding Tight, Letting go – living with metastatic breast cancer, Musa Mayer wrote, Many of the people I interviewed:
- Sought peace of mind through surrender to a will greater than their own. They accepted that death and pain and loss were a part of living. They let go of illusions of immortality and entitlement and found comfort in the contemplation of natural cycles of living and dying.
- Spoke often of the importance of living in the moment, of how they had learned to savor time with the people they loved and to seek out experiences that had meaning to them.
- Kept hope alive by defining their goals and expectations to more closely match the realities of their illness. With mortality no longer a questions – what can you hope for?
- Became expert in reframing their experiences with illness as challenge. Even in the most dire of circumstances without denying or diminishing the pain and fear, they sought out the benefits that were there to be found. They opened themselves up to new insights. They saw their lives with cancer as both a journey of discovery and a struggle to maintain themselves in difficult circumstances.
One patient wrote, I have been asked how I could achieve such calm while facing death. What is the alternative? The only other choice I can think of is to cry, to scream and yell, and just give up – but all that would be a waste of this precious gift of time.
Where does my strength come from? Nature – trees and hills, snow and flowers, the little animals. All these have been a source of solace … As a kid, I often found peace and comfort in the city park … Whenever I have turned to the natural world for guidance, I have not been disappointed … The trees do not mourn their autumn as the leaves fall at the appointed time. New ones are ready to replace them. Death and regeneration exist together everywhere I look in nature. Why should I be different?
Each of us can find meaning in different ways. Have courage and try to find something that bring most meaning and joy to your life during these last days on earth. When the time comes for you to go, Go in peace.
Dr. Robin Kelly (in Healing ways – a doctor’s guide to healing) wrote, Working with the dying, has given me more insights into spiritual matters … in dying, healing is at its most profound. Once the dying person has let go, a peaceful calm follows. This late stage can have a wonderfully soothing effect on those privileged enough to be present. I have felt the most relaxed in my life sitting alongside the bed of a dying person – no need to talk or plan, no better place to be.
Guide to visiting the dying:
- Treat the person exactly as you usually do. Be yourself. Be spontaneous.
- Talk about the issues of the day. The present is still important to the dying.
- If he or she is resting, sit quietly and soak up the peace.
- Respect the dying person’s right to solitude, if this is his or her wish.
- It is not disrespectful to smile or laugh. This can relax both of you.
- If near a window, comment on the day and nature. Make sure there are healthy flowers or plants in the room.
- Value each moment together. Treat each as a precious gift.
Kenneth Caine and Brain Kaufman (in Prayer, Faith and Healing) had another perspective on how to care for the dying. Someone we love is dying … or confronted with a life-threatening illness. We feel empathy, certainly, but we may also feel awkward with them because we don’t know what to say or do. Do we talk about the situation or do we ignore it?
There is a tendency to treat dying people differently. Voices are often lowered. Don’t do that, says Dr. Miller. This loved one or friend is the same person they have always been. They are as full of life as we are. Treat them as equals. They don’t want pity; they want compassion. They want to be treated as very much alive. They want to live as fully as they are able. Here are other rules of thumb from Dr. Miller.
- Don’t go it alone. We shouldn’t try to be the sole caregiver and do everything ourselves. We won’t be able to. We’ll get frazzled and upset. We need to encourage others to help, and when they offer, take them up on it.
- Let the loved one lead. They have needs, so we should let them make basic decisions about their care and their environment. The patient, if possible, should decide which doctors, which hospitals and what treatment they want. Those are not our decisions, they are theirs. It’s their life. Let them chose how to live it.
- Draw them out. Sometimes the most valuable thing we can do is listen. When someone is dying or on the verge of dying, they usually need to talk to others, but they may not know where to start. We can talk about how they’re feeling, encourage them to relay memories, and let them know that we’re there for them if they need to talk. And when they do need to talk, we should let them. And at times when they do not feel like talking, it’s okay to just be there. Often, a gentle touch is also appreciated. It, too, is a form of communication.
- Get advance directives. That’s the proper term for a living will. While the loved one is still able, we should help them draw up instructions for their care should they become so physically disabled that they are unable to communicate. In addition, make sure that their will and other important documents are in order and as they would like them to be.