Palliative Care: Support for Patients and Caregivers
If you've been diagnosed with a serious, long-lasting disease or with a life-threatening illness, palliative care can make your life -- and the lives of those who care for you -- much easier.
Palliative care can be performed along with the care you receive from your primary doctors.
With palliative care, there is a focus on relieving pain and other troubling symptoms and meeting your emotional, spiritual, and practical needs. In short, this new medical specialty aims to improve your quality of life -- however you define that for yourself.
Your palliative care providers will work with you to identify and carry out your goals: symptom relief, counseling, spiritual comfort, or whatever enhances your quality of life. Palliative care can also help you to understand all of your treatment options.
One of the strengths of palliative care is recognition of the human side of illness. In a 2011 survey of palliative care patients, they mentioned these particular needs: "being recognized as a person," "having a choice and being in control," "being connected to family and the world outside," "being spiritually connected," and "physical comfort."
Be assured that you may receive palliative care at the same time that you pursue a cure for your illness. You won't be required to give up your regular doctors or treatments or hope for a cure.
Palliative care may also be a good option if you have a serious disease that has prompted multiple hospitalizations or emergency room visits during the previous year.
Does palliative care mean that you're dying? Not necessarily. It's true that palliative care does serve many people with life-threatening or terminal illnesses. But some people are cured and no longer need palliative care. Others move in and out of palliative care, as needed.
However, if you decide to stop pursuing a cure and your doctor believes that you're within the last few months of life, you can move to hospice. Palliative care does include the important component of hospice, but it's only one part of the larger field.
If your family members also need help, palliative care can provide them emotional and spiritual support, educate them about your situation, and support them as caregivers. Some palliative programs offer home support and assistance with shopping, meal preparation, and respite care to give caregivers time off.
What diseases can be treated with palliative care?
Originally, palliative care was developed for people with terminal illness. But within the past decade, it has become a medical specialty that focuses on a much broader range of serious or life-threatening diseases.
As the World Health Organization states, "All people have a right to receive high-quality care during serious illness and to a dignified death, free of overwhelming pain and in line with their spiritual and religious beliefs."
Today, patients with cancer, heart disease, chronic lung disease, AIDS, Alzheimer's, multiple sclerosis, amyotrophic lateral sclerosis (ALS), and many other serious illnesses are eligible for palliative care.
One of the primary goals is symptom management. The disease itself may cause symptoms, but so can treatments. For example, chemotherapy drugs may cause nausea and vomiting. Also, narcotic drugs to control pain frequently lead to constipation.
By providing relief for various symptoms, palliative care can help you not only carry on with your daily life, but also improve your ability to undergo or complete your medical treatments.
Here are some symptoms that palliative care may address:
- Nausea and vomiting
- Bowel or bladder problems
- Loss of appetite, weight loss, or wasting
- Shortness of breath or labored breathing
- Delirium or mental confusion
- Difficulty sleeping
When can I start palliative care?
You may start palliative care at any stage of your illness, even as soon as you receive a diagnosis and begin treatment. You don't have to wait until your disease has reached an advanced stage or when you're in the final months of life. In fact, the earlier you start palliative care, the better. Anxiety, depression, fatigue, and pain can set in at the beginning of treatment. Palliative care teams understand the stresses that you and your family face and can help you to cope.
Talk to your doctor about a referral to palliative care. In most cases, patients receive palliative care in a hospital setting, but services can also be delivered in a patient's home, a hospice, or a long-term care facility.