Dispelling the myths surrounding palliative care.
Palliative care is an emerging field that focuses on improving the quality of life for patients with cancer and other life-threatening illnesses. Saudi Arabia, Jordan, and the United Arab Emirates all provide localized hospice-palliative care. Because palliative care evolved from the hospice movement, many people mistake it as being only for the patient who is dying.
But it is more than that, says Dr. Janet Abrahm, Associate Professor of Medicine at Harvard Medical School and author of A Physician's Guide to Pain and Symptom Management in Cancer Patients (Johns Hopkins, 2005). "Palliative care focuses on all the causes of suffering for patients with life limiting diseases, from the diagnosis on."
As Director of the Pain and Palliative Care Program at Dana-Farber Cancer Institute, a Harvard Medical School-affiliated teaching hospital, Abrahm works with a team of specially trained physicians, nurses, chaplains and a pharmacist to enhance the quality of life for patients with cancer.
They provide comfort, preserve the patients' dignity, facilitate communication with family members and caregivers, and offer care that focuses on the whole person: body, mind, and spirit. As Abrahm puts it, "We are trying to improve the patients' quality of life while they are living."
Abrahm observes that there are many myths surrounding the practice of palliative care. In this "In Practice" feature she helps to dispel them, clarifying what palliative care is - and what it isn't.
Myth: Palliative care is only for people for whom there are no other treatments for their disease, or people who have given up on aggressive or life prolonging care.
In actuality, palliative care complements aggressive care. It helps patients better cope with the side effects of their medication, as well as the emotional, psychological, and spiritual sequelae of having a serious disease, says Abrahm.
She adds that when patients are relieved of pain, nausea, and vomiting, they are in better shape to receive more aggressive care. For example, if a patient has bad secretions, the palliative care team dries them up so that the patient can receive radiation therapy. Or, if a patient and his or her family is overwhelmed by a diagnosis, the team can help sort that out as well.
Myth: Palliative care is social work
Palliative care providers' work overlaps with that of social workers, but social workers are dealing solely with the emotional response of a patient and his or her family. There are often social workers on a palliative care team. But the palliative care specialist provides the medical and technical aspects of care, and sometimes involves a chaplain for people who feel guilt, shame, or confusion about their illness.
Myth: Palliative care is only for cancer patients
Palliative care is available for patients with cancer at any time from diagnosis on, but is also available for patients with advanced diseases such as stage four heart disease, advanced lung disease, and end-stage renal disease.
"We help people sort out their goals of care - in other words, we help them plan for the worst while they hope for the best," says Abrahm. This involves focusing on what resources and medication they need to be able to function and improving their quality of life. Myth: Pain is to be expected and endured as a natural part of the dying process
Pain is not always part of the dying process nor is it necessarily a part of cancer, says Abrahm. But when it is, palliative care teams have effective ways of making the pain tolerable.
Myth: Pain medications always cause heavy sedation
It is very possible to take pain medication to relieve suffering without experiencing intolerable side effects, like being sleepy or not present. "We can almost always match the medication to the patient, so they will be awake and able to talk to their families," Abrahm explains. She adds that only around five percent of patients need to be asleep to have their pain controlled. Myth: Telling patients they are dying takes away their hope
"If a patient thinks of hope as purpose you have to reframe their purpose," says Abrahm. "When you tell them they are dying it means they are not going to be cured. But instead, you say, ‘If time were short what would you need to get done?'" Such reframing, she adds, creates the opportunity for closure: for leaving legacies, for forgiveness (of themselves and others), for thanks, love, and saying good-bye. What they hope for changes.
Most people have a fear of being abandoned, Abrahms says. That can be alleviated if a doctor says "I will always be here for you," and the diagnosis does not change his or her relationship with the patient and family.
Myth: Palliative care hastens death
None of the drugs provided by palliative care hasten death. They relieve symptoms. "I've had people ask me to help them kill themselves because they are in so much pain," says Abrahm. "But good palliative care can prolong life. Because when the symptoms of disease are well controlled, people want to live longer."
Myth: Patients should avoid taking morphine or other opiates because they could become addicted
Abrahm draws the following distinction: "An addict takes a drug to get out of their life. A patient wants to get into their life." Pain medication, which is carefully regulated by a palliative care doctor, allows patients to do what they need to do to function.
If they take too much they will feel side effects and want to take less. Some patients worry that they will run out of pain medication, and if they take it early on they won't have any left as the pain progresses. The palliative care team makes sure that this never happens.
Myth: Withdrawal is a common problem with pain medications.
If a patient stops taking the medicine suddenly, his or her body will withdraw. But there is no reason for that to happen. The palliative care doctor will not stop giving pain medication, and the patient shouldn't suddenly stop taking it. If there are side effects, the solution is to lower the dose, or find treatments for the less serious side effects, such as constipation.
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