"I had a life-threatening illness and I was being asked whether I wanted this treatment or that treatment. I felt that my life was on the line if I made the wrong decision. I didn't know whether or not I wanted that responsibility. Then I realized that I knew me better than anyone else and that knowledge would be helpful in making a good decision."
At one time, patients and families were considered to be silent members of the health care team, if indeed they were considered team members at all. Today, people with cancer are encouraged to take an active role in treatment planning.
The first step
The first step in developing a partnership with the health care team is to know who the players are and what each one has to offer. This can be a challenging task as, over time, there are often many different specialists involved in the care of the patient and family. It is important to identify one team member who will serve as the leader: often the family doctor, the urologist, the oncologist (cancer specialist), or a specialist nurse. It doesn't matter who assumes the role as long as he or she is able to relate to the man and his family and will be there for the duration. This person should be available at regular intervals, or when required, to listen to concerns, to direct questions to the appropriate professionals, and to serve as a guide and support.
The second step
The second important step is to participate in decision-making about treatment. Although this may seem impossible because of what appears to be an overwhelming amount of information that needs to be taken into account, a skilled professional should be able to simplify the facts so that 2 or 3 alternatives can be presented at any stage of treatment.
No matter how complex one's problem may seem, the team members are expected to be able to help with the decision-making processes by providing the framework of the "big picture," thereby simplifying decisions. His or her ability to explain things is essential in providing each man with the information he needs to participate. Once a few of the initial choices are made based on such information, there will be more time to seek additional resources and pursue the educational process that will be supportive later on.
Participating in decision-making means listening to the options, identifying their advantages and disadvantages, and comparing them to one's own values and aspirations and those of one's family. Some men will want to discuss all of the options, perhaps seeking a second opinion before making an informed decision with or without their families. Others might be uncomfortable making the final decision, but can still participate by clarifying their values and wishes so that the final recommendations for treatment can be tailored to their needs.
The third step
The third step in developing a partnership with the health care team is to participate in the treatment plan - managing the side effects of the treatment, reporting changes in condition, attending follow-up appointments, providing team members with feedback and information on how things are progressing, and using the services and supports that are available.
The health care team is a critical provider of information pertinent to each man's particular problem. When attending appointments with members of the health care team, this is a time to ask questions. They will be expecting it. Having a list is a good way to remember important points to ask. Write down the answers and, if you wish, take someone along to help remember what was said. The early phase of diagnosis and treatment can be somewhat of a daze and having a spare pair of ears around is very helpful.
A note about changing doctors
Clearly, excellent communications between each man and his doctor is critically important to the successful adaptation to the diagnosis and treatment. Unfortunately, some physicians never learn to speak comfortably with their patients or families and in the name of some sort of professionalism let people down by not "being there" for them when tough choices have to be made. Although such physicians may appear to be abrupt, aloof, and uncaring, this is not usually the case. Nevertheless, if this problem creates a barrier, one's family doctor can change the referral to someone else. Remember, there is almost always a choice in terms of the treating physician, so it is important to find someone with whom one feels rapport. One should keep in mind, however, that a decision to change physicians should be based on reality and not on a quest to find a doctor who will promise a cure and guarantee to relieve all fears.
Excerpt from The Intelligent Patient Guide to Prostate Cancer