Hope in the Midst of Illness

Hope is a crucial part of facing and coping with a medical illness. It can not only help a patient survive; it can also promote healing. Hope paves the way toward resilience and supports the spirit as well as the body. Hope enables patients to endure arduous therapies in order to regain wholeness; hope encourages patients to keep going against adversity and odds that may not be in their favor.

Donald M. Friedman, MD
Donald M. Friedman, MD

Hope can create a sense of peace amid the swirling turbulence of having a disease that threatens one’s well being, functionality, or even one’s very existence.

In a Journal of the American Medical Association editorial strikingly titled, “The Power of Hope,” James C. Harris, M.D. and Catherine D. DeAngelis, M.D. wrote

“Personal care begins with a sense of hope for the patient and seeking to maintain that sense throughout the course of treatment. For patients, that means a hopeful prognosis, a promise that something can be done for the illness, that they will be actively involved in their treatment, or knowledge that hospice care may provide solace for their last days if their illness is terminal.” (JAMA Vol 300: 2919-2920, 2008)

Dr. Jerome Groopman, MD
Dr. Jerome Groopman, MD

In his intriguing, knowledgeable, and thought-provoking book, The Anatomy of Hope: How People Prevail in the Face of Illness, Jerome Groopman, M.D., a hematologist and oncologist, gives this definition of hope – “Hope can arrive only when you recognize that there are real options and that you have genuine choices. Hope can flourish only when you believe that what you do can make a difference, that your actions can bring a future different from the present. To have hope, then, is to acquire a belief in your ability to have some control over your circumstances. You are no longer entirely at the mercy of forces outside yourself.” (p.26)

Later on in his book, Dr. Groopman comments, “Hope, I have come to believe, is as vital to our lives as the very oxygen that we breathe.” (p. 208)

So if hope is such a sustaining force in how one faces an illness and even in how lives one’s life, why isn’t it talked about as a real entity and why are its power and ramifications not discussed more in medical education and training? Part of the problem is that modern Western medicine frequently focuses on the disease and not the patient who has the disease. Drs. Harris and DeAngelis comment on this situation by stating, “Modern medical practice intent on completing the electronic medical record or getting to the physical examination risks sacrificing personal care when too much attention is directed to data collection and too little to the patient.” (JAMA Vol 300: 2919, 2008)

In my own view, there is a tendency in medicine to focus on the medications and procedures to help the patient improve, a disease focus, without recognizing the patient’s own capacity for hope, resilience, and healing and without awareness how the patient’s belief system can help recovery from a disease.

Giving medications and doing procedures has solidity and is a proven, well defined, and expected approach, while exploring what gives a patient hope is vague and often time consuming when doctors more than ever have time restraints. Also, patients depend on doctors for advice and help and because of this, rely less on their own capacity for hope and healing that can well complement what the doctor does.

There is also frequently a tendency to overlook what are the other sources of hope besides being cured, especially if there is no cure. Patients may have a hope to live their lives a certain way despite an illness or die a certain way if their situation is terminal. They may also hope to have some control or find some meaning no matter what their disease is or their future holds. This dimension of hope is frequently overlooked and difficult to teach because it can’t be quantified and is so personal. In addition, I’m not sure it’s widely known how hope has positive physiologic effects, which will be discussed below. These effects have been well documented and give credence to the fact that hope can make patients feel better physically and emotionally no matter what their disease. And finally, I think it is difficult for doctors to grasp how to give hope to a patient in a way that is satisfying, supportive, but also realistic and consistent with the patient’s needs and diagnosis.

Dr. Groopman poignantly comments on the beginning of his medical career by saying, “Brimming with the new knowledge, I thought I was fully ready to assume the care of people. I mistook information for insight. While I was well prepared for the science, I was pitifully unprepared for the soul…..the subject of hope and despair were not part of our curriculum.” (p.23)

One can’t talk about hope without first talking about hopelessness, the opposite of hope. Dr. Groopman sensitively describes the case of a young woman who ignored a large breast mass and even initially refused chemotherapy and radiation after the mass was diagnosed as cancer. It turned out she had had an adulterous affair and regarded her disease as a just punishment from God because of her actions and choices.

As I’ve discussed before in another column, such patients will never do well, even if they receive the most up to date therapies, because they really don’t want to get well. It would be contrary to their deserved fate. Sometimes it’s not so obvious, and patients will be more subtle in how they convey their hopelessness and despair. They may accept the treatment, but never embrace it enthusiastically or with a sense of hopeful expectation. And when a patient has no hope or wants no hope, it is difficult for them to even try to recover. It is crucial for the medical team to understand why these patients think as they do; asking about their belief systems can be very effective in helping them adopt a more realistic, less judgmental, and more positive approach toward their recovery.

Dr. Groopman spends time in The Anatomy of Hope on the subject of true hope vs. false hope, a frequent area of uncertainty for even the most seasoned physicians. When there is a threatening diagnosis where nevertheless a cure is possible, such as some lymphomas and leukemias, he feels there is no question that the patient should be given as much hope as possible to get them through the difficult therapies that are curative.

The problem is what to say to a patient with cancer, for example, whose disease has spread so that a remission is possible, but not a cure. Dr. Groopman discusses a case where he painted an evasive, rosy picture for such a patient that was interpreted by the patient and her daughter to mean the cancer was curable. When the chemotherapy finally didn’t work, after some previous remissions, the patient was surprised and unprepared, and her daughter was angry that they had been misled. The approach that not telling the patient everything is a way to prevent worry and concern, and thus help the patient, is really not well founded.

False hope can be shattered so easily. It keeps the patient from dealing with the possible reality and preparing for the worst. It prevents a patient from finding hope that is based on the truth, but can still be powerful and meaningful. In fact, Dr. Groopman concludes that giving false hope using evasion is a “form of abandonment” of the patient. In commenting further about true hope vs. false hope, he says, “False hope does not recognize the risks and dangers that true hope does. False hope can lead to intemperate choices and flawed decision making. True hope takes into account the real threats that exist and seeks to navigate the best path around them.” (p.198)

So true hope, besides supporting the will to go on, the meeting of challenges, and the overcoming of obstacles, can also help patients reason and make good decisions that are in their best interests.

On the other hand, the opposite approach of being blunt with the truth and giving factual statistics of life expectancy can be destructive and take all the hope out of a patient’s grasp, encouraging that patient to think only of impending death.

So what is the best way to give a patient hope in the face of a life-threatening disease and an uncertain future? Dr. Groopman found that the solution was to engender true hope by helping the patient see what the realities were, but still encouraging the development of hope within that context. He feels that the patient should be given “the opportunity to choose what to hope for.” (p.53)

You cannot always assume that patients can’t handle the truth. It may be important for them to make plans in the event that they may die soon, or they may want to think about what they want to do before they die, or how they want to die. Yet even within this context, there can still be hope. The outcome, even with a difficult diagnosis such as metastatic cancer, is never completely certain. That uncertainty and mystery about the future is where hope can come in. There is a chance that a therapy that doesn’t work for all cases might work for a particular patient; sometimes remissions leading to cures can occur when least expected; there is always a chance that some scientific discovery may lead to a cure not available before.

So as long as the future is uncertain, the patient can still have hope, as long as he/she remembers that the future is uncertain, and a bad outcome can still happen. This is what Dr. Groopman calls “the middle ground where truth and hope could reside.” (p. 57) Even with a slim chance of recovery, as long as the patient is aware of the reality the slim chance is up against, hope can be encouraged because it is based on truth and not evasion.

What about persistence in treatment when the odds are really against you? This is an ultimate form of hope. In The Anatomy of Hope Dr. Groopman relates the case of a physician with stomach cancer who insisted on very aggressive chemotherapy with extremely challenging side effects despite the objections of all his physician colleagues who thought it was a worthless attempt.

This physician did survive and triumph over his disease. It was not a case of denial – this physician knew the facts were against him. Rather, he felt it was his right to choose the therapy he thought had a slim, but possible chance of working, because he so strongly wanted to live and try everything possible to make that happen without feeling any regrets about chances not taken.

Dr. Groopman writes, “It represented a certain form of hope – the hope to be strong enough not to yield, to have the determination and fortitude to fight, despite knowing that there was little chance of survival. The mustering of the will to engage the foe and the strength to sustain the battle, in themselves, became a form of victory. Surrender would be on (his) terms, at a time and place of his choosing.” (p.75)

To keep on, even though you know you’ll probably die, is an ultimate form of hope. This attitude and approach require a great deal of faith, which in itself can have a very positive effect on the course of a disease, Dr. Groopman concludes that “To hope under the most extreme circumstances is an act of defiance that permits a person to live his life on his own terms. It is part of the human spirit to endure and give a miracle a chance to happen.” (p, 81)

In light of this story, Dr. Groopman also concludes that a patient should not be written off when faced with a threatening diagnosis, if the patient wants to try a therapy that has a slim, but possible chance, because miracles can happen as part of an uncertain future.

I want to clarify that the above circumstance is very different from the situation of a patient with endstage cancer who insists on another course of chemotherapy, or the family insists for that treatment, when there will be absolutely no significant benefit of prolonged life from such an approach.

The patient and the family must be helped in the process of “letting go” instead of pursuing fruitless therapy that will cause more misery than advantage. In such a case, the medical team should help the patient and family switch from an unrealistic hope for survival to a more practical hope for as comfortable a death as possible and a dying process that is meaningful and supportive of the patient and family through a hospice program.

Atul Gawande, MD
Atul Gawande, MD

This medical issue is beautifully discussed by Atul Gawande, M.D. in his article, “Letting Go” in the New Yorker Magazine, Aug 2, 2010. I thoroughly recommend this article for all to read.

Past experiences and belief systems have an effect on whether one has hope in the face of illness. There is a story in The Anatomy of Hope about a patient who has lymphoma, but who refuses therapy initially, even though he was told the cancer could be cured. He remained negative, hopeless, and distant for reasons that were unclear until it became known, almost inadvertently, that the patient had a friend who had cancer and despite chemotherapy died a very difficult death. The patient assumed the same would happen to him and so didn’t even want to try chemotherapy.

Once this situation was uncovered, the patient was persuaded to start chemotherapy, but with the stipulation that he would control each step of therapy, deciding whether he wanted to continue or not. Once he started feeling better, he continued the chemotherapy and was eventually cured. Past experiences of illnesses within families or with friends can certainly affect one’s viewpoint. As Dr. Groopman observes, “We all seek models of hope and despair, and our sense of hope or despair is reinforced by direct contact with someone who has either prevailed or perished.” (p.119)

As for belief systems that can bolster hope, confidence in oneself, a drive for both independence and remaining in control, and consciously embracing the need to maintain one’s dignity can all bolster a sense of hope. Faith in a higher power can engender hope and support a patient through difficult times. A belief and trust in one’s physician and a willingness to work with that physician toward wellness and/or comfort can also lead to the development of hope.

What about hope in the face of probable death or when first facing a life-threatening illness? Dr. Groopman comments that “Early in the illness, the right to hope against all odds, to seek a miracle is valid…There is a time when the inevitable must be accepted, but this step need not extinguish hope.” (p, 144)

Dr. Groopman had a patient with metastatic breast cancer. She had a sense of her overall prognosis, but still undertook aggressive chemotherapy. Her statement to Dr. Groopman, when presented with her options, shows the strength of the patient and the essence of the issue – “I wish to live as long as possible, so long as there is quality to my life.” (p, 124) Here is a patient who exhibited control over her destiny within the context of her disease. She knew what she wanted, accepted what the reality was, realistically looked at her choices, and decided what her remaining life would be like.

The sense of control and rational decision making offers the hope of still having a say and making the life you want for yourself even under difficult circumstances. It is embracing hope for one’s future instead of giving up in the present.

As Dr. Groopman commented about her, “…she set the parameters of her care with a clear-eyed vision of what was possible, what made sense to her, how she wanted to live, when it was time to die. She seemed to be always in control of herself and her circumstance, dictating her own terms.” (p.144)

This is having hope despite accepting one’s mortality. Here is a prime example of hope fostering resilience, the going on and bouncing back despite hardship. In such circumstances of impending mortality, patients can also find hope in the legacies they are leaving behind and in the joy of relationships with family, friends, and the world in general that they still can have.

Faith, whether it is religion based, spiritual without religion, or purely related to one’s concept of what living life fully personally means, can also be helpful in supporting hope at this point in one’s life.

It is important to remember that even if one has an illness that is not life-threatening, but rather life altering because of its chronicity, such as rheumatoid arthritis, diabetes mellitus, emphysema, and coronary artery disease, hope can still give a patient a sense of control.

Working closely with a trusted physician in a good professional relationship, following instructions and guidelines for treatment, making adjustments that allow for as much productivity as possible, finding gratitude for what still is achievable within one’s limitations, sharing your feelings with your doctor and family and friends about how the disease has affected you and how you’re dealing with the changes are all part of taking control and realizing a sense of hope that can move toward recovery or at least improvement and a sense of wholeness.

Dr. Groopman also points out that there is a “biology of hope” that can help explain the positive effects that hope can have on a patient. He had his own experience of recovery from severe chronic debilitating low back pain, unresponsive to surgery and medical and physical therapy, which made him wonder whether he “may have felt physical changes caused by hope.” (p.162)

A physiatrist (rehab medicine physician) had told him to ignore his pain while working through an arduous physical therapy program to strengthen and stretch his muscles and ligaments, rather than protect his muscles and soft tissues by doing no activity. Dr. Groopman was given a new sense of hope, when everything else had failed,, and he retrained his brain to respond to the pain differently, without fear, while he went on to benefit from the physical therapy with eventual resolution of his pain. This all made him wonder about the mind-body connection.

As it turns out, our bodies make natural forms of the strong pain medication morphine called endorphins and enkephalins. Dr. Groopman points out that “Belief and expectation, two cardinal components of hope, were also fundamental to the biological effects of placebos.” (p, 167)

Placebos are inert substances that can nevertheless have biological effects. Belief and expectation, part of hope and part of the placebo response, can stimulate the brain to release endorphins and enkephalins, leading to pain reduction and also a general sense of well being.

Another central nervous chemical that can affect pain is cholecystokinin, or CCK, which blocks endorphins. “Some researchers contend that belief and expectation also interfere with CCK release, thereby enhancing the analgesic effects of endorphins and enkephalins.” (p.173)

Dr. Groopman also points out that there is not just a mind-body connection (thought patterns and emotions affecting release of body chemicals), but a body-mind connection as well. He cites William James, a 19th century psychologist, who “postulated that neural input about the physical conditions of our tissues was a primary modulator of our positive an negative emotions.” (p, 178)

Groopman further comments that “When our organs are diseased …our systems failing, nerves from these diseased body parts transmit signals, such as pain, that potentially amplify our feelings of fear, anxiety, and despair. The stirrings of recovery from our tissues help generate the feeling of hope.” (p. 178) In short, messages from our peripheral organs to the brain can affect how we think and feel. So hope can be influenced by our ideas and thoughts (our cognition), but also by both how one feels physically and the neural messages that go to the brain from diseased organs. Hope does have a “thinking” aspect and a ‘feeling’ component. The fact that you feel better when you’re hopeful may be partly related to those natural chemicals released because of the presence of hope in your life.

The role of hope in the face of mystery, already briefly mentioned, needs reemphasizing. I’ve quoted Rachel Naomi Remen, M.D. before about the subject of mystery and uncertainty, but her thoughts on this topic have great relevance regarding the subject of hope. In her CD, The Will to Live and Other Mysteries, she comments that “Science can’t explain everything. Some things can’t be measured. People can come alive in facing mystery – even with a bad illness.” She also feels that in the presence of mystery, “Life is larger and things are possible and the unknown gives hope a real chance to be present and powerful.” Dr. Groopman states this viewpoint beautifully when he says, “Each disease is uncertain in its outcome, and within that uncertainty, we find real hope, because a tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic impact.

This is the great paradox of true hope: Because nothing is absolutely determined, there is not only reason to fear, but also reason to hope. And so we must find ways to bridle fear and give greater rein to hope.” (p.210-11) So in this world of mystery and uncertainty, hope can always reside.

Hope can thus play a major role in helping a patient deal with an illness, whether making adjustments or helping face issues of mortality. It is the doctor’s responsibility to support realistically the patient’s ability to hope, which itself is an intrinsic part of every human being’s makeup. A trusting doctor-patient relationship can encourage the patient to have hope, even under difficult circumstances.

In fact, Drs. Harris and DeAngelis conclude in their JAMA editorial on “The Power of Hope” that “Most importantly, no patient should ever leave a visit with a physician without a sense of hope…an encounter with a patient should leave the patient emotionally more able to deal with his or her illness.” (JAMA Vol 3[00:29]20, 2008)

The doctor helping the patient find a sense of hope must feel that the hope is justified and reality-based, no matter what level the hope is on or what situation in which the hope is experienced. Otherwise, the patient will see it as a false hope, the kind of hope that is not sustaining.

The power and possibility of hope is best summarized in the last words of The Anatomy of Hope when Dr. Groopman says, “I see hope as the very heart of healing. For those who have hope, it may help some to live longer, and it will help all to live better.” (p.212)


1 Comment

  1. One of the most spiritual people I know once answered a question: ” I don’t believe, I hope.” Thank you for this sorely needed meditation.

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