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Summary

There are two parts to this discussion.

The first is a subject that doctors are generally reluctant to bring up: whether it is time to shift goals from cure to quality of life. To help make a reasoned decision, our discussion includes a list of factors to consider.

The second part provides information about alternatives to consider if you decide to make the shift.




Is It Time To Shift To A Goal Of Quality Of Life?

Whether to shift from treatment with a primary goal of a remission and a secondary goal of quality of life, to treatment focused solely on quality of life, or to take an extended treatment vacation for the same purpose, is a totally personal decision. There is no right or wrong. There are no rules, and no guidelines. Some people decide to continue treatment until the last possible moment. Other people decide to stop earlier. Whatever you decide is what is right for you.

When considering the decision, keep in mind that you can always change your mind and resume curative/preventive treatment. That said, there is also the risk that your cancer may have progressed by then. The cancer’s advance may close off the possibility of certain treatments that may be available for you now.

As you think about this decision, speak with the people closest to you and your advisors for their input. Don’t wait for your doctor to bring up the subject. (Studies show that doctors generally wait for patients to bring up the subject.) Bring up the subject as soon as you are ready.

When thinking about whether to continue, try to take as much emotion out of the situation as possible so you can make as objective a decision as possible.

It can help to make a reasoned decision by breaking the subject down into a list of factors, and to consider each factor one at a time.  Thinking about the factors one-by-one can also help minimize the emotions involved in even a discussion about this subject, much less a decision.

Consider the following which are listed in no particular order:

  • Are you clear headed? The best way to think about a decision of this importance is with as clear a head as possible.
    • If treatment or a particular drug is causing you some mental fogginess, speak with your doctor about taking a break to clear your thinking.
    • Are you depressed? If so, it is natural in the situation. Still, depression colors everything black. Perhaps treatment for depression may change the way you view the situation. Speak with your doctor. To learn about:
      • Depression, click here
      • The signs which indicate depression, click here.
  • Are side effects under control? Side effects can be emotionally draining and physically exhausting.
    • If side effects are not under control, are they short term or long term?
    • Have you explored all alternatives for bringing them under control?
    • For information about various side effects from treatment, and suggestions for dealing with them, click here.
  • Are you wondering whether additional treatment is worth the financial cost?
    • If so, have you done any financial planning to see if you have maximized your finances, checked income sources including possible government benefits, and considered ideas for decreasing expense?
    • Have you learned how to deal with debt? How to prevent creditors from harassing you?
    • For information about these subjects, click here.
  • If your doctor told you that treatment isn’t working and there are no others to consider, have you:
    • Obtained a second opinion – especially from a doctor connected with a NCI designated comprehensive cancer center or an educational institution? Rather than being offended by the idea, most doctors welcome an additional pair of eyes. For information about second opinions, click here.
    • Researched possible cutting edge treatments which may be available through a clinical trial?  For information about how to do this, click here. 
    • Researched treatments available outside the U.S. from quality doctors or institutions?
    • Asked your doctor what he or she would advise his/her child if the child were in the same situation you are?
  • Have you explored the idea with your doctor of taking an extended treatment vacation? If not, consider such questions as:
    • How aggressive is your cancer?
    • What does your doctor think the consequences would be of taking an extended treatment vacation?
    • Has he or she had experience with a patient in your situation taking a vacation? If so, what have the results been?
    • What if you later decide to resume treatment?
    • Is there a compromise that could work for you?
    • If you elect to go off treatment for an extended period of time, could you arrange to have your blood work done weekly to see how it's going and not risk an unexpected increase in cancer cells?" 
  • Has your doctor tried to quantify the amount of time you have left on the planet if you continue treatment compared to what will happen if you don’t continue treatment? Keep in mind that the doctor’s opinion will be based on statistics – and that statistics do not predict what will happen to any particular individual. For more information about statistics, click here
  • What is most important to you now?  Goals change with the facts. We can’t change the hand we are dealt, but we can change goals as facts  change. Examples of goals that other people have found important are:
    • Greater quantity of life, no matter the quality
    • Being here for a specific event, such as a child’s wedding
    • Only quality from here on
    • Feeling normal for a while
    • Preserving money and other assets for heirs
  • If you have young children, is your goal to give your young children as positive memories of time with you as possible? (As Jill put it: “While I can, I want to make memories that he remembers of us being happy and me being not ill.”) If so, have you compared that to the possibility that you will not be here to help guide a child for a longer period of time? Can you change your treatment schedule to be better when needed by your children, for example, at their vacation time?
    • For information about telling your children about your health, click here
    • For information about taking care of children if you are become unable to or after you are gone, click here
  • Have you considered the possibility that no matter how slim the odds, you are one of the people who will survive if you continue treatment? There is always the possibility that no matter how many people die of the same condition, you could be one of the people who survive.   
  • Are you familiar with the concept of palliative care?
    • Palliative care treats the symptoms of a disease rather than the disease itself.
    • When the concept of palliative care was first introduced, it was used as part of hospice care (end of life care). Now, palliative care can be used along with treatment for a disease. It does not have to be instead of.
    • (Palliative care is usually covered by health insuranceMedicare and Medicaid (Medi-cal in California). If you do not currently qualify for Medicaid, it is possible to take steps to qualify. For information, click here. 
  • Have you spoken with a professional mental health counselor?
    • A discussion with a person not emotionally involved with you and your family can provide clarity to a situation. If nothing else, the professional can act as a sounding board to help you clarify your own thinking.  
    • If you have health insurance, these sessions may be covered.  
    • To learn about available mental health professionals, and how to choose one, click here.  
  • Have you spoken with your oncologist? Your doctor is likely to have the advantage of experience with similar situations to add to your cache of information.
    • Keep in mind that he or she may have a professional philosophy of keeping a patient alive as long as medically possible rather than focusing on the patient’s desires. 
    • Do not be surprised if it is painful to bring up the subject with your doctor.
    • Rather than have a discussion that is rushed, let the person who sets the doctor’s appointments know that you need a longer appointment to discuss a subject that may take some time.
    • Like other important meetings with a doctor, consider recording the conversation with your doctor’s permission so you can review it later without the emotion that underlie the meeting. Recorders are inexpensive. You may be able to record on your mobile phone.
  • Have you spoken about the subject with the people you are closest to and perhaps with your spiritual advisor? Undoubtedly, this can be a difficult discussion to have – particularly if you are looking well. And yes, people may try to prevent having the discussion with words like “you’re being negative” or “you’re just depressed.”  Still, this is a decision that affects them as well. At least give the people closest to you a chance to add their opinion. If nothing else, it will help prepare them for whatever decision you make.

Keep in mind that a discussion doesn’t change the reality that the final decision is yours, and yours alone, to make.

If You Decide To Stop Treatment

If you decide to stop treatment after careful consideration, it does not mean that you are giving up hope, or that you are a quitter.

  • As Paul R. said: 

“We still have hope that the cancer will remain stable enough to do the things we want to do, and hope that this special time with family can be enhanced with wonderful memory making events instead of being sick in bed and that maybe, just maybe, there will be a new drug available soon.”

  • Jeannie Moore, a survivor and patient advisor at the Colon Cancer Alliance, says:

“No one has a choice over the hand you were dealt regarding cancer, but we all have a choice in how to play that hand. How you play it may be different than another, but we all look at our hand, get advice from professionals, input from our family and loved ones, and then we make our play… Each of us, as individuals, will be faced with making the decision to focus on quality vs quantity of life. This is one decision we have control over.”

Family and Friends:

  • Think about what to tell family and friends. There is no right or wrong way to disclose this decision, or even to decide to tell. 
  • Use the discussion as an opportunity to remind people about the importance of appropriate screening. Screening saves lives.

If you have young children, think about what to tell them. How to tell them depends on their age. For information, click here.

Complementary Medicine: Consider working with integrative healers who practice complementary medicine. Integrative medicine is designed to treat the person and not just the disease – it takes into account the mind, body and spirit. For information about complementary treatments, click here

If you work: If you are still working, decide whether you want to continue and, if so, under what terms. For example, work only part time. Or work more from home. These ideas are called “accommodations.” To learn about reasonable accommodations and how to negotiate for them, click here

Travel: If you decide you want to travel, speak with your doctor about his or her thoughts on the subject. Ask about the specific place(s) you are considering visitng. Read our in depth information about traveling with a serious health condition which starts with preparing for the trip.

Legal and related matters: We suggest that you read our guide about nearing end of life. The guide includes information about such matters as tending to your legal affairs, legal documents known as advance directives to be sure your wishes about medical care are respected even when you can’t push the issue yourself, and coping with the roller coaster of emotions. Click here.