Guidelines for Patients and Caregivers

by

Dr. Murray F. Brennan

Chairman, Department of Surgery

Memorial Sloan Kettering Cancer Center

Guidelines for Patients

Being a patient with cancer is a challenging and sometimes daunting task. Here are some guidelines that may help you and your loved ones cope.

1. You are in charge. It is extraordinarily important that the patient be allowed and made to feel that he or she is in charge of his or her care. So often we see patients lost in a morass of treatment by committee, losing identity, and any idea of self. Nobody likes the feeling of drifting helplessly, buffeted by apparently uncontrollable forces related to their disease or their treatment. Much of this is influenced by the approach taken by doctors and other caregivers, but it is also the responsibility of the patient. You are in charge.  You can be in charge. It is important that you feel in charge.  It is clear that the patient who does feel in charge of his or her own life, own illness copes with greater equanimity than the patient who abandons hope, and becomes a bobbing cork on a very rough sea.

2. There is a doctor who can help. Patients with inadequate care may not have the doctor to lead their care who is the best person, for either their disease or their individuality. If you have this feeling that you or your doctor are not coping with your illness, remember “there is a doctor who can help.” This does not mean that someone can provide you a magic wand and all the problems will disappear, but there is someone who understands your illness, understands what is available and can guide you through what needs to be done. Often this is a specialist, who has seen your type of problem many times, but it does not necessarily have to be. Most importantly there is a doctor who can make you believe that you can be helped and that you can confront your fears and anxieties. 

3. Family can help. Do not forget your family can help. You must be willing to allow them to help, but you also must be willing to take a stand when their efforts to help are not those that you need. Often, you, the patient will feel that “I wish people would leave me alone.” It is perfectly appropriate to let your feelings be known. It is perfectly appropriate to ask for help from your family. If anything, your family is desperately looking to find ways to help you, and the simplest help that you might not have accepted, when you are well, becomes a very gratifying reward when you are not well.  I like to tell the patient that this is, for the family, “pay back time.” It is time to pay back all the things that the patient has done for members of the family and to be repaid without malice or expected reward, and with compound interest!

4. Cancer is not a punishment. The way in which patients view a cancer diagnosis varies widely. One of the unfortunate harmful ways is to view cancer as a punishment--a punishment for an inappropriate previous lifestyle, a punishment for attitudes or behaviors towards others, or for things not even known. Cancer is not a punishment. Cancer is a disease, and should be seen as such. You cannot go back and live in the past. You cannot change what you did in previous years, but you can go forward. You can change a lot going forward, but it has to be done in a way that utilizes your resources, strengths and weaknesses to get better not to get worse.

5. The doctor can have a bad day, too. Some patients fail to appreciate that there are days when the doctor may have a bad day.  The doctor is allowed to have a bad day, but he or she is just not allowed to have a bad day every day. Be aware that your doctor, just like you, often has a family--a troubled son or daughter, an ill parent, a mortgage--all of the things that you struggle with. There will be occasions, which should be rare, should be uncommon, because if they happen to you more than once, then they must be happening to others on multiple occasions. So, give the doctor a little slack, but not too much slack.  If he or she is having a bad day everyday, then he or she should not be looking after you, and should be addressing whatever it is that troubles him or her.

6. Waiting is inevitable.  In this day and age waiting is inevitable. Sometimes the better the doctor, the longer the wait.  What can one possibly say to alleviate that except--be prepared. The wise patient will come with a book or music or something to alleviate the time spent waiting.  It is disrespectful of the doctor to keep you waiting, but in the majority of cases that is not deliberate. It may well be that the doctor does have too many patients, and does keep you waiting, but the only solution for the doctor is not to see you at all. A thoughtful doctor will apologize for keeping you waiting, but he or she will also be the person who, when he expects to see you for a brief follow-up visit, and you have a new problem or a different problem, will take the time to sort that out, thereby making others wait. Many specialist physicians have no idea when the patient first comes, whether it will be a simple evaluation, or a complicated one. The doctor cannot know how well you are prepared, how much you know. Nothing consumes the good doctor’s time more than having to make the time to redefine the appropriate expectations of the patient, who has been sent with little or no forewarning of the seriousness of their illness.

7. Tears are OK. Laughing and crying are both emotions. It is OK to laugh, it is OK to cry. They both serve a purpose in helping one get through any life threatening illness. Tears, like laughter, can be shared. It is normal to feel sorrow and potential loss, sharing helps.

8. There isn’t any treatment—including no treatment—that has no side effects. Some patients believe that all treatment should be risk-free and side effect free, and that is just not so. There is no treatment that does not have some downside risk.  Doing nothing has a downside risk in anxiety, frustration, and anger.  Doing something is never without personal cost.

9. Most patients get better. We tend to forget that most patients, particularly patients with soft tissue sarcoma, do get better. The majority of patients are cured. So try not to dwell in doom and gloom with a cancer diagnosis without understanding there is a very good chance you will get better. More importantly, it is not living with cancer that is the problem, it is dying from it. In the future, much of the treatment may well be control not cure, like any other chronic illness.

10. Finally, miracles can happen. Every physician, every patient knows of somebody who, apparently terminally ill, recovered to the amazement of all who were caring for him or her. Miracles can happen, but they just do not happen every day.

Guidelines for Caregivers

Being a caregiver for a patient with cancer, whether family or friend, is a challenging and sometimes daunting task, but there are ways in which you can help.

1. Cancer patients need to be aided and assisted, not avoided. Do not be afraid to visit; do not be afraid to offer your help.

2. Cancer is not a contagious disease. Touching usually helps. It is important, particularly in those patients who are close friends or family members to recognize that hugging can help. Physical contact is often desired, but do not be put off if the loved one initially rejects your attempts at physical intimacy or physical contact. It takes time to adjust to the thought of a cancer diagnosis. It takes time to adjust to the realization that your body has somehow “let you down.” All of this will come about and the need and desire for physical contact becomes real.

3. Optimism is infectious. It can be transferred. It can be transmitted. False optimism, however, can be unkind. The patient often cannot believe that they will get through even the simplest part of the treatment plan. Realistic optimism can help this immeasurably.

4. Silence does not mean rejection. Often, your presence can be more valuable than your words. If the patient does not wish to talk, do not try to force the issue. Conversely, if you fear the silence, and suspect withdrawal, ask. The simplest approach is often the best—“do you wish talk, do you wish me to stay, would you like me to leave?” Establish a firm understanding that you will do what the patient wants and be pleased to do so.

5. Laughter and tears are both emotions. There is a place for both—share them. Even in the darkest hour, laugher can be kindled.

6. If you really think that you have an idea that will help – ask. If the suggestion is accepted, do it, if it is not, then drop it and return to it another day if you think it is really important. The patient with cancer is often overwhelmed and has difficulty making the simplest of decisions. Forcing the issue will rarely help. Accepting that some decisions cannot be made now, is just empathetic understanding.

7. Often the easiest way you can help is by helping those who the patient loves—care of a child, a spouse or a pet, can often alleviate stress far more than direct assistance to the patient. Most patients fear not just for themselves, but fear what their illness will do to those they love.

8. Insurance companies are not always right. Often a willingness to make a call to address an issue of an insurance carrier for a patient relieves an intolerable burden that adds to their difficulty. Tenacity in this situation will often win out. Nothing cheers the insurance carrier more than you giving up!  Did you ever read or watch Grisham's "The Rainmaker"?  (No slander intended!)

9. Be very sure that you understand the relationship that the patient and the doctor have before jumping into the midst of it. On occasions, you can make that relationship better by asking questions, or by listening. On other occasions, it can be destructive. Assess ahead of time with the patient what they need you to ask of the doctor and what they need you to listen for or take notes on.

10. The future is not off-limits—it can be discussed. Plans can be made; provisions to be met can be discussed, but only in the context of not removing all hope because the future is where hope lies.

V1N6 ESUN Copyright © 2004 Liddy Shriver Sarcoma Initiative