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Medical Decision-Making

by Doralee Grindler Katonah, Psy.D., M.Div.

Presented at the 6th International Congress on Cancer,
Hong Kong University, Hong Kong, Nov. 1999.

 

I spoke with a man shortly after his wife of 45 years died. He was remembering a pivotal moment when his wife's illness began and she had been examined by several doctors. He recalled vividly the feeling of being in an office facing three doctors, all of whom were recommending exploratory colon surgery. Not only did they all agree about what they thought best but they were communicating a sense of urgency - we need to do this surgery immediately, before it is too late. He described how he felt the burden of making this decision and wanted desperately to do what would be best for his wife's health. He recalled looking over at her: "She just kept looking straight at me with this fear in her eyes about going through with the surgery." I saw the look but I didn't think it was important to explore this with her. I felt such time pressure and thought I should do what the doctors said. She had the surgery and they found nothing, but there were side-effects to the surgery that began her decline. He says to me: "I now look back and wished that I had allowed her to speak about her fear and to take the time to help her communicate to me what SHE sensed was best for her."

People diagnosed with cancer have to make very difficult decisions quickly. The physicians usually make a recommendation or present options along with the statistics. Often there is no clear-cut sense of what is best nor guarantees of a cure; while at the same time, they communicate the sense of urgency to decide. Often emotions are intense; patients and families are upset. And in this state, it is not easy to think through a decision, to weigh alternatives, to process the medical information productively. Yet, as Joan Borysenko points out: "The dominator model so prevalent in western medicine is no longer considered to be the most effective method of healing. People want more say in their treatment. Research already indicates that active participation in one's healing process does impact outcome."

There are several typical ways in which people tend to approach this decision-making task. Many people go into their heads and try to weigh the logic presented by the doctors to make their decision. Sometimes decisions are made by family members who have a strong opinion about what is best and push for it. This family pressure often silences and disempowers the patient. Others just assume "the doctor knows best" and abdicate a more active involvement in decisions.

If decisions are made in any of these ways there is a certain way in which the person of the patient has stepped aside and is not involved.

If we recall the woman with the look of fear in her eyes. In a sense that look has something to say too. There is a "you" deep down inside - the inner you that is your aliveness behind everything that is also responding to what is happening and has a perspective that needs to be included. Our life experiences create in us sensitivities and dispositions and skills of thinking which can be accessed by attending to a felt sense in your body. This is different than emotions and different than jut thinking about the decision. The felt sense is concretely felt but at first without words. If attended to, it begins to speak and offers a perspective or an action step that you could not access through a logical approach. This information when taken into consideration brings with it a sense of centeredness that is felt in the body. This is a kind of bodily wisdom that supports parasympathetic activity and wisely guides you towards healing.

This process can have a powerful function in the process of medical decision-making. I will now present two case vignettes to illustrate how this works. The first case demonstrates the use of focusing to find an inner step that will help the person make a crucial decision regarding her treatment for breast cancer. In the second case, I will follow a person over time while making several decisions and how attending to her felt sense helped her in this process.

Carol is a woman in her 40's who had just been diagnosed with breast cancer. She had received both a first and second opinion from two topnotch physicians. Her father who also was an oncologist agreed with their recommendations. All three doctors were aggressively recommending a program of treatments including an initial surgery, a follow-up surgery, and chemotherapy. When she contacted her therapist she was breathless with anxiety and a sense of urgency. As she began to speak she spoke rapidly and her words were filled with "they said...." Then they said I have to...." If we just look at the language itself, the repeated use of the word "they", expresses how she was filled up the physicians' perspective. There was no space inside her yet for her to even begin to sense her own responses to the diagnosis and the recommendations. This began a focusing session.

THERAPIST: I want to say to you that you can take the time, right now, to come down inside yourself and see where YOU are with all of this. What feels right to you? "What is YOUR sense of what you need right now?"

PWC: (SILENCE) Oh, what comes there is, I want to see the X rays. My father used to take me to the hospital with him when I was a child. He showed me how to read x-rays. That is what comes now. I want to see for myself what they are talking about. Oh, I guess I could ask the surgeon to show me.

(When a step comes from the body like this, it is important to resonate it back to the body to see if this is right.)

THERAPIST: Notice what came there and check and see if your body resonates with that. Ask yourself, is this what I need to do next?

PWC: (Silent attention to her body) Yes, I feel a sense of release now in my body. It's like a breath of fresh air.

(This feedback from the body usually takes the form of a feeling of release or increase in energy which further confirms the message that came. )

Notice how specific the perspective is that came there. " I want to see the x-rays. " It is very individual to her and based upon a significant childhood experience. No therapist of health care professional could ever have come up with this for her. And this particular step will not fit for other patients. It is only her body that knows what is uniquely needed in order to come to a decision that feels right to her.

THERAPIST: You are going to be pressured to move very fast. You need to continue to make a space to sense from your body WHAT IS RIGHT FOR YOU.

(This inner step that came which she followed through on led her to decide to go with the doctors recommendations but with a different feel inside herself. She no longer felt so frantic and scared.)

PWC: I know I have many hurdles in front of me, but I sort of feel like I have a place in myself to stand.

 

This second vignette follows a cancer patient over time through several decisions. She is a long-term cancer survivor as it is now 11 years since her diagnosis. of breast cancer. She also knew focusing quite well before her diagnosis so she was able to rely upon listening to her felt senses relatively easily. Still there was a time when she really didn't know what was right. Later she made a decision that went against medical advice.

Reva is a 66 year-old woman, married, with four adult children and 6 grandchildren. Her cancer was discovered as a result of a routine mammogram. After the mammogram came back positive her gynecologist referred her to a surgeon.

She went to her appointment alone. Reva describes herself as a very independent person so it didn't occur to her to ask anyone to come with her. She was waiting in the doctor's office. Now when someone is facing this kind of crisis, sometimes they feel the urge to act differently, to allow a new part of themselves to grow. As Reva awaited her first consultation with this surgeon she did something different. In her words now:

REVA: Then a person I know walked by and saw me sitting there and said, "Hi!. How are you doing and what are you doing here?" And I told her what I was doing and she said, "Would you like me to wait with you?" I'm a very independent person and generally I do everything myself, but I remember saying to her, "You know, I really would." That was probably one of my first big steps toward my healing - because I did something different. I even asked her to go in to see the doctor with me because I was worried whether I would actually hear everything she had to say.

Reva noticed her bodily response towards her friend's invitation. This enabled her to respond differently than she would have in the past which enabled her to have more support during this crucial visit. The first physician was also authoritarian in her manner and didn't discuss options but rather insisted that a mastectomy was the only answer.

REVA: The woman surgeon turned out to be very unexpectedly hard - straightforward - kind of unfeeling. To have my "friend" there with me really made a difference. With her support I was able to pay attention to how this interview felt in my body, I decided to seek a second opinion.

After this appointment Reva went to the library and picked several books on cancer to read. This is when she learned about a lumpectomy. The second doctor had a more collaborative style and also thought that a lumpectomy could be performed. Reva didn't want to choose a doctor and decide about treatment until she found a sense of rightness in her body. She noticed that the second doctor was warm and caring and considered options with her. She described noticing that after meeting with him she felt confident. She decided to work with him and went through the surgery.

Because there was lymph node involvement, her doctor thought that she should have chemotherapy. Her oncologist recommended that she participate in a research program and receive the treatment that was randomly assigned to her. He insisted that he didn't know which treatment would be better; that is why they are doing the study. This was a very difficult decision for Reva to make, especially because the doctor kept telling her that he didn't know what was best She turned to her support community.

REVA: My friends just held me and I cried in a way I never had before. I felt so little. After a while the sobbing stopped and I felt renewed and more of my strength came back. I then decided to sit with the sense in my body about the decision I was about to make. What came was: "I don't know enough. The doctor doesn't know. Just go with the research and trust."

She received the highest dosage treatment. The side-effects were debilitating. She was sick, she lost her hair. But slowly her body recovered and her hair began to grow back. Then Spring came and she was scheduled for another round of chemotherapy as defined by the research protocol. Again she focused and she began to notice a sense of uneasiness within.

REVA: This time, there was something about it that just didn't feel right.

THERAPIST: Can you just give your attention to that sense of "not feeling right."

R: (Silence) I got this very clear message, "You don't need any more chemotherapy and if you take it you're abusing your body. You‘re doing harm to yourself because the stuff is so strong and it just wipes out so much." The message was: "You don't need any more."

(Notice how specific and certain this inner message is. It really can happen like this, but the next question is what do you do with this kind of message from your body)

Reva now describes what happened after this focusing session.

REVA: I immediately went to the phone and called some good friends I could talk to about this. I couldn't get anyone. Nobody was available and I had to go to the doctor's. Once I was at the doctor's the message came again, "You don't need anymore." And it was scary. I didn't know whether or not to go with this inner message.

REVA: But I went to the doctor and I told him. He was very upset with me. He told me my results couldn't be used - that I was messing up the protocol and they really needed this data. I kept saying: "I know that I have to do this...this is what's good for me. I'm sorry about all of that and I have to say NO."

Reva followed the messages she received from her bodily felt sense several times. Once the message she got went against what the doctor was recommending. This was an important juncture for her, to choose to trust this message and Reva continued to recover successfully from her cancer. She looks back upon her cancer journey:

R: I found within myself a strength I didn't know I had. I learned how to ask for help. I found out that I wasn't alone as I had always felt myself to be. I found an inner strength that I continue to rely upon.

Reva has been free of cancer for 12 years.

Here are two different examples of ways to apply focusing to the decision-making process. I want to summarize with four simple points.

  1. It is important to be informed about the illness and the treatment options. This provides the field from which the person can sense inside for their own inner sense of what is needed or right for them. So, people need to be encouraged to ask questions and seek more information so that their felt sense is fully informed. The patient could be told: "Take a little time now to sit with what I have said and ask the questions that emerge." "Are there any other concerns that you have."
  2. The Felt SENSE is not the same as the intense emotion; however, intense emotions may need to be expressed because if they remain unexpressed, they may block one from accessing the questions that are there and the action steps that will help one find a centered place re. their decision.
  3. Communicate to people that they have the time to sense inside for what they need to make a decision that "feels" right in their body. Physicians could say: "It is important that this be your decision and that you come to a sense of confidence and inner assuredness about the direction to proceed. There may be other steps you need to take to help you come to your decision. Take the time you need to come to this resolution."
  4. In honoring this form of knowing you are helping the person with cancer find a centeredness and an inner consent to treatment or an alternative to treatment . This is bringing mind/body and spirit together for the sake of healing.

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