Laura J. Martin, MD
"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.
"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.
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:
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:
"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."
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:
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."
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:
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?
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."
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:
"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:
"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."
SOURCES:Sean Morrison, MD, director, National Palliative Care Research Center and Hermann Merkin Professor of Palliative Care, Mount Sinai School of Medicine, New York, N.Y.Farrah Daly, MD, associate medical director, Capital Caring, Washington, D.C.Thomas Smith, MD, co-founder, palliative care program, Massey Cancer Center, Virginia Commonwealth University, Richmond, VA.Temel et al. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. N Engl J Med 2010; 363:733-742
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