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Coping with a Life-Threatening Illness

Palliative care improves life by helping patients and caregivers cope with life-threatening illness.

"I'm sorry, but there's nothing more we can do."

No patient wants to hear that. No doctor wants to say it. And with good reason: It isn't true.

It is true that in the course of many illnesses, cure ceases to be an option.

But no hope of a sure cure does not mean no hope at all. It certainly does not mean there is nothing more to be done.

When you receive the information that your illness is serious, a palliative care team can help you handle the news and cope with the many questions and challenges you'll face.

Many people associate palliative care with end-of-life care. Although all end-of-life care includes palliative care, not all palliative care is end-of-life care.

The palliative care team works alongside the doctors working to extend your life and, if possible, to cure your illness. By relieving your symptoms, the palliative care team may actually help you improve.

This approach to care is for anyone with a serious, life-threatening illness, whether they're expected to live for years or for months or for just days.

"Our role is to help people live with a serious illness as long as possible, as well as possible," says Sean Morrison, MD, director of the National Palliative Care Research Center at Mount Sinai School of Medicine in New York.

Coping With the News

"You can be the most intelligent, organized person in the world, but hearing distressing news about your condition makes it hard to keep things straight," says Farrah Daly, MD, associate medical director for Capital Caring, which serves more than 1,000 clients in the Washington, D.C. area.

That makes it hard to ask the right questions -- and easy to misunderstand the answers.

Daly's advice:

  • Bring someone with you to significant medical appointments. Let the other person do whatever it is you need: ask additional questions, write down information, or just be a fly on the wall and listen. "They should support you in whatever way you need to be supported."
  • Ask as many questions as you need. Don't worry about asking the same questions over again. "A lot of people come out of discussions like this with misconceptions, because they didn't want to seem like they didn't understand, so they didn't press their doctor for more information."
  • Try to keep an open mind. "Often, people interpret the news as worse than it actually is. "

What does Daly mean by that?

"When doctors start focusing on managing symptoms rather than on a cure, people's lives often improve," she says. "And the time frame that you have left can vary widely. A lot of times, people can manage symptoms for years. When you are involved with palliative care earlier, symptoms are better managed, and you have more support in terms of making difficult decisions. Certainly people can do better than they might ever expect."

Patients cared for by a palliative care team may actually live longer than patients who don't, says Thomas Smith, MD, co-founder of the palliative care program at Massey Cancer Center of Virginia Commonwealth University.

"A study done at Massachusetts General Hospital with lung cancer patients showed that those who were randomized to early palliative care plus the usual oncology care lived 2.7 months longer than those who got usual oncology care alone," Smith tells WebMD. "The palliative care group also had better symptom management and less depression, and the caregivers fared better afterward, maybe because they were prepared, or their loved one died at home rather than in the ICU, intubated."

Morrison advises that you ask your doctor the following questions:

  • What can I expect in terms of a prognosis? What are realistic expectations for how long I might live?
  • What is the likelihood of a cure? Is there anything that could potentially cure this disease?
  • What treatments are available that would allow me to live in the manner that I would like for as long as possible?

 

Sharing the News

Once you've learned about your diagnosis , you will have to share the news with others. For many people, this is the hardest part -- and the most necessary. "I encourage people not to go it alone," Daly says. "Some people feel better when they tell everyone. Others like to keep it as private as they can. But even for those who are very private, I encourage them to be sure that the people they most rely on are included in the circle of those who know what's going on and what you're feeling."

No matter who you tell, be sure to also tell them what you need.

"If you don't direct them in how you want them to help you, they'll help in whatever way they can figure out, and that might not be what you need," Daly says. "Maybe you need for them to come to your house every day and check on you. Maybe you need them to back off except when you call on them. It's different for each person. Don't expect people to guess."

There are many approaches for updating friends and family about your condition. You can:

  • Designate one friend or family member to pass the news along
  • Send out blanket e-mail updates
  • Create a Web site or blog, or join an existing one like caringbridge.org
  • Post updates on Facebook

"Some people want to tell their story over and over again to each person -- it helps them process their feelings," says Daly. "Others don't want to relive the experience and would rather someone explained things for them. There's no one right way."

Coping With Anxiety

How do you handle the fears and anxiety associated with a life-threatening illness? First, do your best to know what to expect (as far as that's possible). Anxiety is often related to the unknown.

Ask your doctor:

  • What symptoms should I expect, and what are you going to do to treat them?
  • If I'm going to have pain, how will we manage it?
  • How do I reach my doctor and palliative care team in an emergency? "There's nothing worse than being in serious pain or having shortness of breath and not being able to do anything except call 911," says Morrison.

You should also make sure you have a support team around you. That includes family and friends, of course, but remember that they are anxious about your illness as well.

"It's important to have an impartial, less emotional person to talk to," says Daly. "A support group for people with your illness, or a social worker at your hospital or medical center, can help you talk about your fears without feeling like you're overwhelming your loved ones."

You can also take your mind off your anxiety by finding time to do the things you love, things that you might not have been able to do when focused intently on a cure.

"One of the burdens of curative treatment is it often takes a lot of time," says Daly. "You go to the doctor's office, come home and rest, go to the infusion center, come home and rest, go to a specialist, come home and rest. That's OK, but it's a burden of treatment. Use the freedom you have from that burden to enjoy yourself. Be critical about how you're spending your time, because time is precious."

Coping With Pain

The first thing you need to know about pain is that it can be treated.

"There shouldn't be the expectation that you have to live with it," says Morrison. "In fact, there's data showing that untreated pain will lessen your ability to function and may even shorten your life, so it's important to treat it early."

Some things you should know about pain management in palliative care:

  • Treating your pain early doesn't mean that treatments will not be effective later.
  • Treating pain does not lessen your ability to recognize if a therapy is working or if your disease is advancing. "Pain should not be used as a marker for whether or not a treatment is working," says Morrison.
  • You are not likely to become addicted to pain medication. "And if you do have such a history, we can manage that as well. Just because you have that history doesn't mean you need to suffer. You just need more specialized care," Morrison says.
  • Side effects of pain medication can be managed too. "Constipation, nausea, and cognitive changes can be side effects of pain medication," says Morrison. "But we can treat those too. Nobody should be in pain because of fear of medication side effects."

To manage pain effectively, your doctor has to know as much as possible about what you're experiencing.

"Try to report your pain as accurately as you can. There's no reason to minimize it or to try to appear stronger about it," says Daly. "Describe what it feels like, where it's located, what makes it worse, and what makes it better. Be prepared to tell your physician anything you've already tried for the symptom, in as much detail as you can."

That's your starting point. Then, as you go forward, keep track of how the treatments affect your pain. When do you need to use it? Does it help you a lot or only a little? What are the side effects? Is it helping you reach your goals, like working in the garden or going out with friends?

Coping With Spiritual Concerns

One of the most important members of any palliative care team is a chaplain. Whether you're Christian or Jewish, Hindu or Buddhist, atheist or agnostic or just not sure what you believe, almost everyone has some sort of spiritual concerns in the face of a life-threatening illness.

"You're trying to make sense of what is happening to you," says Morrison. "We may tell our kids that life isn't fair, but we still somehow feel that it should be, and illness like this always feels so unfair. And you may be thinking about questions like whether or not you have regrets, and how you amend those regrets, no matter whether or not you have faith in an organized religion. Chaplains really are trained to help with spiritual crises for those who do and do not have a faith identity."

Planning for the Future

If you've received news that your illness is no longer curable, the idea of planning for the future might seem futile. But as you've learned, many patients live for years, very well, with a "terminal" diagnosis. How can you make the most of your remaining time?

"Think critically about what's most important to you," Daly advises. She suggests that you ask yourself these questions:

  • What makes a good quality day for me?
  • How do I like to spend my time?
  • What would I like to be doing right now, that I can't do because a symptom is holding me back?

"Those are the keys to improving your quality of life," she says. "Sometimes I meet a patient for the first time and they tell me that their pain or nausea is 'not too bad.' Then I probe further and find out that they've been living with the symptoms for so long that partially treated pain and nausea have become 'normal.'"

When you're treating for a cure, treatments can be aggressive and often come with extremely difficult side effects. But in palliative care, the goal is to make you as comfortable and happy as you can possibly be. Treatments are available that can alleviate and minimize nausea or pain -- if not take them away entirely -- and make it possible for you to do many things you may have long since given up.

"Some of my patients just want to be able to go outside and enjoy their garden," Daly says. "Others just want to go and enjoy coffee with their girlfriends without being nauseated. In palliative care, we work toward bringing back those things they've lost. People do have to give up a lot of things when they're ill, but if you fight for symptom control, a lot of those things you enjoy are attainable again."

Planning for the future also means planning for the end, when it does come. That doesn't mean that it's tomorrow. "You can talk about your death without saying that you're ready for it yet," Daly says. "It's just good planning. Honestly, it's something you should do even when you're young and healthy, but no one does. Always be talking with the people you trust most about what you would want done, and who you would want to make the decisions when you can't make them for yourself."

Things to think about include:

  • Where would you like to be at the end? (At home, in a hospice, in a hospital?)
  • Who would you want to have near you?
  • What would be most important to you at that time?

"Planning for this does not mean you're OKy with it happening," Daly says. "But when you plan in advance for the end, it's a lot more likely to be a peaceful experience for you and your family, with less anxiety and tension."

As you make these plans, rely on your palliative care team.

"My goal is that the people who get referred to me live for a very long time," Morrison says. "And we help them manage all of the complications, all of the questions, and all of the resources they need to deal with both the disease and its treatments. That's what we're here for."

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