The fear of pain is a major concern for cancer patients [1] and for any individual facing a serious or prolonged illness. It is not just the physical burdens of pain that are problematic. The nonphysical manifestations of pain including anxiety, personality changes, feelings of helplessness, a sense of frustration, sudden anger, and guilt can be devastating for the patient’s sense of well-being and for their relationships with those around them.

Patients and their advocates and caregivers are given numerous details about a diagnosis and proposed treatment plan, but may receive little information early on about the “pain control plan.” Those facing serious illness and their caregivers need to feel confident that they have been given enough information to assess pain levels, training in how to competently manage pain, and assurances that they will have access to the best resources and pain specialists. Those who are taught to view pain as a normal and often inevitable process will not be blindsided and unprepared if pain becomes a challenging issue. I have had many caregivers express their deep-rooted fear that the patient will experience pain that becomes impossible to control and patients often fear untreatable pain more than death itself. These feelings may be impossible to avoid, but addressing them openly and early in the course of treatment may alleviate a great deal of anxiety for both patients and caregivers.

Pain is ever changing, difficult to manage, and physically and mentally debilitating for both patients and their caregivers. Acting as a caregiver for a patient with severe or chronic pain is one of the most stressful and demanding roles a person can accept. Research studies confirm that caregivers of cancer patients who are in pain have significantly higher levels of depression and anxiety [2]. Aside from the obvious and understandable levels of fear, being a caregiver thrusts people into physically demanding roles that they are often not trained for or emotionally prepared to handle.

Caregivers are often asked to assume intricate medical duties such as assessing pain levels accurately, administering and monitoring powerful medications, and communicating with teams of highly trained medical personnel including oncologists, pharmacists, and nurse practitioners. In my personal situation, I was given a brief tutorial on drawing blood from Kate’s central line, flushing the line with heparin, and changing the dressing around the central line, and then I was expected to assume these duties at home on my own. I was also responsible for watching for signs of infection and blood clots. Even as a health-care professional, I was overwhelmed and fearful that I would make a critical mistake that could jeopardize my daughter’s health.

Managing my daughter’s central line often meant that I was the one causing her physical and emotional pain. We both knew that the line went directly into a vessel near her heart, and we felt the stress associated with changing the dressing or tugging on the skin. It was impossible to have a dressing change that was painless and that did not cause moments of intense stress. It is even more difficult to deal with the patient’s pain when it is your actions that are causing the distress. No matter how many times you tell yourself that you are only doing what must be done, this is a predicament that caregivers are not prepared for and often face alone.

Caregivers may not fully comprehend the true scope of their responsibilities, especially when they lead to emotional dilemmas. Health-care professionals need to provide caregivers specific information about the requirements of their duties, but they must also prepare people for the many psychological components that are a part of tending to the ill.

When my daughter was diagnosed with cancer in 1989, there were few resources available to find current information about retinoblastoma. I was not familiar with the Internet or medical information search companies, so I went to our local medical school bookstore and looked at pediatric textbooks that contained data and statistics that were outdated and frightening.

Fortunately, patients and their advocates now have access to cutting-edge resources for facts and support when facing illness. There are an ever-growing number of people who are willing to take the time and expend the effort to learn about their symptoms, diagnosis, tests, and medications. There are some physicians who discourage their patients from doing their own research and admonish them to “stay off the Internet.” Once a patient shows any interest in seeking their own facts, it would be helpful for professionals to be supportive of these efforts and to guide people to reputable sources of information.

The government offers many sites appropriate for the public, including Healthfinder.gov, MedlinePlus, Agency for Healthcare Research and Quality (AHRQ), and the Centers for Disease Control and Prevention (CDC). Patients can be advised to look for web sites that contain the HONcode which guarantees that the site abides by standards for reliable health information.

Another excellent resource is Planetree Health Resource Centers for information and support. Planetree offers “health links” which is a list of the best sites for health information, and some Planetree centers will conduct a literature search and assemble an information packet on a specific illness for a reasonable fee. This is a good resource for people who do not want to spend time doing research or who aren’t savvy with computers. Some Planetree centers offer lecture series and links to online support groups as well.

What I look for in a physician has evolved over the last two decades. When Kate was first diagnosed, her pediatrician gave us a referral to an oncologist, which we accepted without question. I didn’t know how to research his background, to ask for any other referrals or second opinions, or to set up a brief meeting to see if he seemed to be a “good fit” for our daughter and our family. I have learned over the years that thought and research is needed before establishing relationship with a physician. Extra care should go into choosing a doctor with whom patients are likely to have a long-term relationship such as internists, oncologists, or pain specialists.

I have now set the bar high, and my requirements for a good doctor-patient relationship must include excellent communication and access, a sense of warmth and compassion, absolute truth and transparency, and a feeling of trust. If any of these are lacking, I know I need to make a change. We had the experience of realizing that we needed to leave the care of Kate’s oncologist after 8 years of working together, so I have lived through the thought process and the emotional aspects of changing doctors during a complicated treatment plan.

In 1998, we came to the unexpected and immediate conclusion that we needed to find a new oncologist for Kate. Kate had a bad reaction to one of her three chemotherapy drugs, and the decision was made by all to discontinue the medication. We hoped to continue her regimen with the remaining two drugs, knowing that it was less than ideal. Even though all the tests had shown no cancer anywhere in Kate’s body at the time, the tumor board and our oncologist decided to invoke a “futile care” policy and stop all chemotherapy. Our oncologist called me at the end of my work day with no advance warning to inform me that the hospital would be stopping treatment because the cancer “will undoubtedly come back.” I was supposed to be comforted by his comment “Don’t worry – we will be sure you have lots of pain medicine.” I was alone, stunned, and panic stricken, and I had to drive home and break the news to my husband. I had never felt so abandoned by a physician or another human being in my life.

There had been times along the way that we weren’t happy with this doctor’s level of communication or his demeanor, but we made the mistake of brushing these intuitive feelings aside. Now in my work as a patient advocate, I routinely advise people to heed these internal warning signals and to search for a provider who includes them in thought processes, rationales, and the decision-making process. Patients may come to their physicians with misgivings about a specialist or other provider, and I suggest that doctors listen carefully to the patient’s concerns and encourage them to find a new practitioner if they are unhappy in any way.

Many patients suffering from illness and chronic pain are cared for at home by relatives. While family members may seem like the logical choice to be caregivers, they often face unique challenges and stresses. The services of outside caregivers may be a financial burden, and families often want their loved ones to be cared for in their own familiar home environment.

Children caring for parents have their own families, careers, and other responsibilities in addition to the many hours spent providing care for loved ones. Vacations, hobbies, relationships, and travel plans may all have to be altered or abandoned to make time for the patient. Many caregivers are elderly spouses who may have their own health issues and physical limitations. Many family members are so emotionally involved in the situation that it can become difficult to notice subtle changes in the patient’s condition. Certainly, fatigue and worry can impair a family member’s ability to assess pain levels and to deliver quality care on a consistent basis.

Other family members are impacted by the experiences of the caregiver, including spouses, friends, coworkers, and siblings who may all notice a decline in the caregiver’s attitude, health, and demeanor. Children of caregivers may be adversely affected by the stressful situation their parent is facing, and siblings of an ill child may have an especially difficult time adjusting to the changes and the disruption in their household.

I have had the unfortunate and life-altering experience of being a sibling of a critically ill child and the parent of a daughter facing a life-threatening illness. I watched my parents become consumed with making complex medical treatment decisions when my late sister was diagnosed with a congenital cardiac defect that necessitated a complicated open heart surgery. At 7 years old, I desperately wanted to understand what was happening and I sensed that the problem with her heart posed a risk to her life. When I asked my mother point-blank if my sister could die, she broke down in tears and couldn’t form an answer. I wanted to know the truth about the situation, but I immediately knew that I had asked the wrong question.

Siblings see their lives change overnight, and they may feel that they are losing touch with their parents both physically and emotionally. Siblings need and want to know the truth, but they want to ease their parent’s burden even more, so they internalize their fears and their questions remain unanswered. Siblings often tell me that they felt removed from their sibling’s illness and that they had to find their own ways of dealing with the stress of seeing their brother or sister in pain. Ten years after their sister’s death, my own two sons react very differently to the memory of Kate’s experience with cancer. My younger son who was six at the time remembers more of Kate’s exuberant personality and the fun things they did together like playing games on her bed. My older son who was twelve at the time says he “prefers not to think about” the doctors, hospitals, and the episodes of extreme pain he witnessed. His sister’s illness and the resulting consequences still make him angry and frustrated. He was just old enough to have the memory of the suffering leave a permanent imprint on his psyche. Editor’s note: I would highly recommend eye movement desensitization and reprocessing (EMDR) for the caregiver’s older son, even this far removed in time. This process clears out long-term potentiation in the brain and is the most potent and very fast treatment for PTSD symptoms. It is a good tool, but also requires a good therapist to do it successfully. There is an EMDR Guild which lists all certified practitioners in her area.