Addressing End of Life Concerns With Metastatic Breast Cancer

Tips for having a discussion, planning, and more

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Most people—both those living with metastatic breast cancer and their loved ones—find it hard to talk about end of life concerns.

The usual scenario goes like this: People with metastatic breast cancer want to talk about these concerns, but are afraid to upset their loved ones—so they stay quiet. On the other side, loved ones are afraid of upsetting you by talking about end of life issues—so they say nothing.

The same holds true even for patients and oncologists, and studies tell us that these conversations take place much less often than they should.

Many people fear these discussions are a sign of giving up. Yet talking about your wishes does not mean you are giving up at all. It does not mean that you have lost hope that you will be one of the people who lives for decades with stage 4 breast cancer. What it means, instead, is that you want your decisions to be thought out, and not left to chance. It is a way to communicate your wishes before circumstances may force you to do so.

We’ll take a look at some of the end of life concerns you may have, but the best place to start is with the most important step. How can you begin these discussions with your loved ones?

Beginning Discussions

There is no best way to bring up end of life concerns, and what may work well for one family may not work for another.

With that in mind, here are a few tips for initiating a discussion and opening the lines of communication.

  • Pick a time when nobody will feel rushed and won’t be bothered by distractions. Turn off your cell phone.
  • Be clear about the discussion you wish to have. If you try to bring up the topic too gently and hem and haw it’s easy to chicken out, or at least tell yourself you’ll bring up the topic another day. Resolve to bring the issue to the table and don’t back away.
  • You may wish to begin by asking your loved one how much they understand about your condition and the prognosis. Research tells us that roughly half of people believe that metastatic breast cancer is curable.
  • You may also want to begin by acknowledging the elephant in the room—you are still hoping that treatment holds your cancer at bay for many years but understand that this does not always happen.
  • Take time to listen without interrupting. Your loved ones may need some time to catch up with thoughts you have been processing for some time. Allow them to express themselves—many people will suggest yet another treatment option you haven’t explored—even if you’ve already decided that you don’t wish to pursue any further treatments.
  • Be prepared to go where the conversation leads. End of life conversations are more often than not an ongoing process, and most of the time you don’t need to worry about covering everything you wish to talk about in one sitting.

Stopping Treatment

One of the most difficult decisions people will have to face with metastatic breast cancer is when to stop treatment. This was not a problem until recently, as most people would reach a point when there were simply no further treatments available.

Now, instead, we have many more treatment options, and women (and men) usually face difficult decision at some point. Should you consider yet another line of treatment that may extend your life a few weeks in exchange for side effects which diminish your quality of life? When should you stop treatment?

The first step in making this decision is to take a moment and consider the goals of your treatment and compared these with what our oncologist is thinking. We’ve learned in recent years that there is a large disparity over what patients and oncologists may expect from chemotherapy for stage 4 cancers.

One study found that the majority of people with stage 4 cancer thought there would be a possibility that chemotherapy could cure their cancer, whereas the oncologists said there was little if no chance for a cure.

Questions you may wish to ask about stopping treatment include:

  • What can I expect from further treatments? Are there any treatments which could potentially increase your chance of long term survival? If not, what gains may a particular treatment offer? Does the treatment extend life for a matter of weeks or a matter of months? Of course nobody has a crystal ball, but it can be helpful to understand what a treatment is expected to provide for the “average” person.
  • Are there any treatments available which may possibly improve your quality of life? For example, could a treatment reduce pain, shortness of breath, or other symptoms?

What stopping treatment does not mean:

  • Stopping treatment does not mean you are giving up.
  • Stopping does not mean that you are stopping all treatments. If a treatment such as radiation therapy may reduce bone pain, for example, stopping treatment does not mean foregoing these types of treatments.

Anticipatory Grief

Many people with metastatic cancer—and their loved ones—experience a grief similar to that associated with death and dying but while still living. This type of grief, called “anticipatory grief,” is common, but many people are afraid to express these feelings.

Loved ones, especially, can find it difficult to cope with these emotions. Comments such as “why are you sad when she’s still alive” can reinforce your thoughts that you should not be having these feelings. But these feelings are very common and very normal for both those in the later stages of cancer and for their loved ones.

Anticipatory grief (preparatory grief) can be even more difficult to cope with than conventional grief (the grief after a loss) not only because it may not feel socially acceptable to express this grief, but because it includes many losses. These can include a loss of your dreams, a loss of your role in the family, and much more.

There is a tender balance between holding on to life and letting go. There is no magic solution for these feelings and no platitudes that diminish the anguish you may feel. If you can, finding a friend who can simply listen to your feelings knowing there is nothing that can fix them can be a wonderful comfort.

Hospice Care

The decision about if and when to choose hospice care is emotionally laden. As with stopping treatment, there is the fear that choosing hospice care means giving up. Instead, choosing hospice means that you are choosing to live out your last days as comfortably as possible.

What Is Hospice Care?

Hospice care is a type of palliative care, and like palliative care, is more of a philosophy than a place. Many people receive hospice care in their own home, though hospice facilities may be available as well. A typical hospice team includes a physician who specializes in end of life care, hospice nurses, cancer counselors, and chaplains. It’s care that seeks to maintain the comfort and dignity of a person and his or her family for as long as he or she lives.

When Should You Ask for Hospice Care?

Very often we hear people say they wish they had opted for hospice care earlier on, so how can you know when it is time?

In order to receive hospice care, you usually need a physician’s note saying that you are expected to live six months or less. If you live longer that is not a problem and there is no penalty. Your care can either be renewed for another six months or discontinued. You can also change your mind at any time if you decide you would rather pursue treatments designed to treat your cancer.

How Will Hospice Help?

Many people are amazed at the help available when hospice is instituted. In addition to care from the team, hospice most often provides a hospital bed, oxygen, and any equipment or medications needed. This can save a lot of running around for your family and make you as comfortable as possible.

If you choose to die at home, being under hospice means that at the time of death the police do not need to be called. Your family can spend time with you until they wish to call the funeral home.

Advance Directives/Living Will

If you’ve been hospitalized during your treatment you’ve likely been asked if you have a living will or advance directives. There are many variations on a living will, but all of these are essentially a way to express your wishes and desires in writing if you are someday unable to express them yourself.

Most of these ask what you would like to do, for example, if your heart stopped or if you are unable to breathe on your own. Would you want to be placed on a ventilator? You can be as detailed as you wish, and some people also add information about their wishes for a memorial service if they should die.

Your cancer center may have given you a copy of a living will to fill out, or these can alternatively be downloaded from the internet. To be legal, these documents most commonly need to be signed by you, a witness, and a notary.

Why Prepare These Documents?

There are two very important reasons to prepare these documents. One reason is for yourself, so that your wishes are honored. They gave you a chance to dictate what will happen if you are unable to speak for yourself.

Another reason is for your family. Decisions near the end of life are difficult to begin with, but even more challenging if family members second guess themselves wondering if they are truly abiding by your wishes. This can become even more of an issue if family members disagree, and can lead to hurt feelings and family friction. Taking the time to spell out your wishes may prevent painful disagreements as your family members argue over what they believe you would have wanted.

End of Life Planning

You may be hearing about “end of life planning’ and wonder: “How in the world can you prepare?” It’s true that there really isn’t a way to prepare, at least emotionally. But there are a few things you may wish to talk about with your loved ones. Again, initiating these conversations can be very hard and ridden with emotion. You may even wish to make a few notes about some of your wishes ahead of time.

Addressing Painless Death

One common concern is about pain at the end of life. Many people are terribly frightened that dying will be painful. Others worry that using medication will hasten their death and wish to be as alert as possible. The best time to talk to your doctor is long before the issue arises. There are many options for pain control at the end of life and the vast majority of people can be comfortable, even with dying at home.

Talk to your family and your oncologist about your wishes. Some people wish to have as little pain as possible even if they will be drowsy. Other wish to be as alert as possible, even if they feel more pain. There is no right or wrong way when it comes to pain control, only the way which best serves your wishes.

Choosing a Location

Another concern is about where you will die. Some people to prefer to die in a hospital or hospice unit, whereas many wish to die at home. If you do wish to die at home it can be very helpful to talk with your family and oncologist long before you need to in order to be properly prepared at home. Too often, these preparations are not done and people end up going to the hospital against their wishes.

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