I accompanied both my parents and my only sister Maia through their cancer treatment and their dying experience. With all three, right after the diagnosis, there was tremendous, blinding fear. The world “cancer” has a toxic, psychological effect on top of whatever physical illness is playing out. Witnessing their doctors who seemed to savor their power, giving a patient a cancer diagnosis or death sentence, made me very angry. It’s probably the closest to God-like powers they ever feel. “Is there nothing you can do?”, was always the first question, voiced in utter desperation. The doctor, in a triumphant voice, sold the “solution”: chemo and radiation, immediately. They cut off any discussion of alternatives.
Most people I talked to right after their diagnosis were in tunnel-vision mode: only Western medicine can heal us, didn’t you hear the “survival percentage” assigned to my kind of cancer? If your beloved or close relative is going through this stage, the best help is unconditional support, for whatever they chose. Believing in alternative medicine, I was aware that starting chemo would cause so many side effects and weaken the entire system so much, that it might close off other paths of treatment in the future. Still, pushing at this time of extreme fear for an alternative route might land you outside the “circle of trust”. You will be told after the decision has been made, so your “doubtful attitude” can do no harm to the blind trust in the doctor.
People who have just received a possible death sentence are extremely protective of their energy and they will not chose you as an advisor if you are not aligned with what the medical establishment suggests is their only chance. I sat next to the doctor when he told my sister who was unsure of the very aggressive treatment the doctor proposed: ”Just think of your children! Can you be responsible for robbing them of their mom just because you want to experiment?” Later, when in the middle of the treatment she felt so horrible she wanted it stopped, five doctors surrounded her bed and the chief physician bellowed: “This is not a democracy. You either accept this treatment or you empty the bed for someone who desperately wants it. But if you leave now, I’ll give you two weeks.”
First with my mom, then my dad, then my sister we went through months of exhausting treatment and extreme ups and downs between hope and desperation. I put my own feelings about Chemo and radiation aside, just wanting to help, show my love, be close. With all three of them, there was a short phase of improvement, brief hope – and then the final devastating blow. My mother lay stark naked on a cold metal table, as the doctor run an ultrasound tool over her belly. “I’m sorry. See those dark spots here on the monitor? This means your cancer has advanced in the last month. If it keeps growing at this rate, you might have another month.” Then they left her alone to chew on it. With my sister, they said:” Your leukemia has come back. One doesn’t survive that. Maybe 2-6 month.”
My sisters face went ashen. I jumped into protection mode. I argued with the doctor, that his words hurt my sister, possibly blocked her healing. There are many studies (among others by Mario Martinez about psycho-immunology) that show clearly that the belief of a patient in their healing is key. As I had been my sister’s knight in shining armor throughout the past year of fighting leukemia against what doctors called impossible odds, I was in attack-dog mode – I couldn’t stand seeing her so wounded by his words. My sister left the doctor’s office on my arm, crying and broken. After this, she played for time. How long could she stretch out her time? At this point, she even tried alternative medicine, but it was too little, too late.
If I sounded too optimistic, she got mad. I explained that my role had been to not believe the harsh predictions of the doctors, who had declared her as good as dead four years ago. At this point, we did discuss funeral arrangements, during a walk in the park. She started the conversation, but when I started asking questions she quickly became uncomfortable and wondered aloud if I only waited for her death so I could go home (to Los Angeles). You might find that people go back and forth between the stages of acceptance, anger and negotiation – and despite glimpses of acceptance in between they might have to go for another round. It takes a lot for a care-giver to ride the waves with the person faced with death, being patient and as flexible as a rubber band throughout the process. What counts is to give unconditional support in every stage – and to take good care of yourself and especially of your body: eat well, sleep a lot, get massages, acupuncture. You need to be a fountain of love as much as you can – an emotionally independent entity that does not expect their needs met by the dying.
Only a few months ago, my friend Kirk had died in the ICU after a ruptured colon as a result of colon cancer. Even in the ICU, the doctors never told him what was happening. They told me he was on maximum life support but was expected to die within two hours. He had no clue. A week earlier, he had told me he was going to do a movie this fall and sat in his bed, working on his laptop. I could see the color of death on him and asked him gently if he wanted to share some of his thoughts about his life with me. His condition was serious but he said all this morbid talk was bad energy and he wanted to focus on positive things and get out of hospital.
Now here he was, a week later, with a few hours to live. He was fully conscious, but intubated, so he couldn’t talk. In his denial phase, he had never made arrangements for his death or how he wanted it to happen. I asked him if he wanted to know what was going on with him, and he said yes. I told him gently, while holding his hand, that he had a massive infection, was on maximum life support, his brother would arrive in two hours and the doctors hoped they could keep him alive that long.” I could see it working in his face. Then he made a gesture, and I gave him something to write. He wrote with great effort: “calls”. I got his cell phone out and went through the contacts, he signaled who I should call. I explained the situation, that Kirk had only a short time to say good buy and couldn’t talk, but wanted to hear their voice. There were amazing, sweet and loving words uttered. As I held the phone to Kirk’s ear, tears streamed down his face and he smiled.
When the calls were done and his brother had arrived, Kirk pointed to the intubation and motioned to take it out. We called the doctor who explained that Kirk would only have a few minutes without the tube. Did Kirk understand and agreed anyway? Kirk nodded. I took Kirk’s strong arm and smiled: “You’re going to die like a warrior! A warrior knows when to fight and when to die!” He nodded with pride and I could see how much it meant to him to be in charge of his own destiny at least to this degree.
In the meantime, many of his friends had arrived. They all said good-bye. Kirk had motioned for his brother and me to stay. We switched off the overhead lights and removed as much of the cables and silenced the beeping machines. His brother and I held him as the nurses removed the tube. Kirk died in our arms a few minutes later, as I hummed a calming song to him.
When is the right time to fight for survival? When is the right time to prepare calmly for death? I’ve seen my sister entering the hospital four years ago looking totally fine. She had been told she had leukemia and would die within a week. She was bombarded with chemo, radiation and a bone marrow transplantation and then indeed looked close to death. She put up an incredible fight and lived four more years. We might never know if all the torture in the hospital made any difference. Would she have lived just as long with alternative medicine, more peacefully? The Western doctors quote statistics and studies (all made by their peers, of course) and claim to know the answer: “Definitely not!”.
If a patient has entered the path of Western medicine, they need our full loving support to endure the painful treatment and the often non-supportive, harsh industrial atmosphere in hospitals. To me, the deciding factor is hope: if a person has hope amidst all the challenges of chemo/radiation, I fully support their fight.
If their life quality has diminished to a degree where they are barely hanging on and the only emotion that keeps them alive is fear of letting go, I believe it’s high time for “the Talk”.
The Talk is best to have earlier on, without any sickness on the horizon. It’s not a morbid though to imagine how we would prefer death, at home or in a hospital. If we want to prolong life, no matter what – or if we insist on a certain quality of life. Once a diagnosis has been made, it’s extremely difficult to approach the subject as it will be perceived as gloomy and morbid at a time where all one needs is hope.
After initiating the Talk, the first answer is usually: “I’m not afraid of dying”. A sentence which is easily said when death seems so remote and impossible to imagine, that the statement actually feels true.
Anyone who ever wanted to discuss an Advanced Care Directive with a parent experiences how initially, they might readily approach the paperwork, hoping for multiple choice technicalities. But when detailed questions are raised about what constitutes a life worth living for them or where they would draw the line to stop life support, a big silence is the answer. Every human has an inbuilt inhibition of crossing that line, of imagining their own dying process. Still, stretching outside your comfort zone for just two hours will spare you and your family a lot of grief and indecision later on when your time comes. We all prepare for birth. If we give death the same attention, we can actually have an amazing, meaningful experience for all involved.
While having the Talk, it is very important to make yourself available for physical contact, if the person in question seeks it. They might need to feel held while considering such difficult choices and consider their own mortality, maybe for the first time. If they seem restless and can’t decide, give them their space and back off, return to the paperwork a few days later.
In the case of my sister, who had two little children, the question of “giving up” and accepting death as inevitable was equivalent to her “not choosing to be with her children anymore.” – this moment was NEVER going to come. Until her death, she was never able to tell them about her dying – other family members did, during on of her many stints in the ICU. Only three days before her death, she called me from home and told me that she decided not to have any further medication, blood transfusions and other life prolonging measures. She was so tired. What was it all for, she asked herself? We both knew she had put up a lioness fight for 4 long years and had come to the end of her road. Even at this moment, she still said that maybe her body would somehow heal itself and that she could still see her kids grow up.
My sister has never been a very direct person. We talked in a roundabout way about dream images: us walking hand in hand, she dressed in white, with a white flower reeve on her head, in a forest. She floated, I walked. The ethereal, beautiful image that we shared said it all: that we both knew she was dying, even though we never said these exact words. She needed to know she could share this vision with me and that I was ok with it. I was. I said that we would always be sisters and find ways to be with each other, even between the worlds. The next day she told me she didn’t feel like eating anymore. Soon after, I got on the plane.
When I saw her, hours before her death, she couldn’t talk anymore. It wasn’t necessary to tell her what was happening. I sang her a song for a long time, holding her cold hand for hours, smiling at her, telling her I loved her. That all her affairs were in order, that it was a perfect time for her journey. That she was on the runway, heading into the sunset on another adventure. The last sunrays came into the window. She couldn’t consistently focus but every now and then I noticed her fully look at me. I could see in her eyes that she was finally ready.