Coping With a Life-Threatening Illness
Palliative Care: Improving Life for Patients and Caregivers
Coping With Pain continued...
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.