Hospice organizations have existed in the U.S. since the 1970s, and they have perfected the art and science of taking care of people at the end of their lives. Most people in the U.S. are somewhat familiar with the kind of end-of-life care that hospices provide to patients and their families.
Palliative care, on the other hand, is an emerging field in health care that overlaps somewhat with hospice care but involves some important differences worth discussing.
Patients and families who are battling mesothelioma may find that their cancer treatment facility has a palliative care team or a physician who specializes in palliative care. If a mesothelioma patient is admitted to the hospital and struggling with the effects of their treatment or their disease, his/her oncologist may request a consultation from a palliative care physician or team.
What is Palliative Care?
The primary goal of palliative care is to help a patient with a serious illness (such as mesothelioma) to feel better. The focus is to prevent or reduce the symptoms of the disease or the side effects of the treatment. Palliative care is multidisciplinary and focuses on the physical, emotional, spiritual and social comfort of the patient.
When a patient has mesothelioma, there are common symptoms and side effects that impact quality of life, including pain, nausea, chemotherapy-induced peripheral neuropathy (nerve damage), shortness of breath and trouble sleeping. Any treatment aimed at reducing or preventing these symptoms or side effects is considered palliative care.
In contrast, potentially curative cancer treatment aims to completely eradicate or control the cancer and includes chemotherapy, surgery, radiation and emerging treatments like immunotherapy. It is important to note that patients can receive both potentially curative treatment and palliative care at the same time.
A physician, registered nurse, counselor or chaplain can provide palliative care, but some providers specialize in it. Some hospitals have formed palliative care teams that work with patients who are struggling with issues like pain or nausea. Some outpatient cancer centers also have palliative care physicians who work with oncologists to help patients feel better as they receive cancer treatment.
What is Hospice Care?
When someone has a disease that is considered terminal and whose life expectancy is predicted to be less than six months, hospice care may be offered to the patient and family. If potentially curative treatment is not working or the risk of harming the patient with further treatment becomes too great, then it may be time to consider hospice care.
The type of care provided by hospice organizations is considered palliative in nature as it is aimed at maximizing quality of life and minimizing disease symptoms.
The main difference between palliative care and hospice care is that no potentially curative treatment is given when a patient is on hospice care. This means that patients under hospice care are not undergoing chemotherapy or clinical trials aimed at treating their mesothelioma.
Some types of treatments such as a paracentesis or palliative radiation therapy may be offered during hospice if the goal is to help the patient feel better.
A hospice team may include physicians, nurses, chaplains, social workers, counselors and volunteers, and hospice care is provided to the patient and the family in their home or in a nursing home. Throughout the U.S., there are hundreds of hospice organizations that provide highly specialized end-of -life care to patients.
The past 40 years have seen a dramatic improvement in the way that health care teams take care of patients who are struggling with a terminal illness. Of course, there will always be a focus on curing and preventing diseases, but patients and families also want to have the best quality of life possible.
Both palliative care and hospice care are important treatment modalities that focus on living well with serious illnesses.
Questions About Hospice Care and Palliative Care
Q: Do private insurance, Medicare and Medicaid pay for palliative care?
A: Coverage for palliative care varies by provider, but care from a palliative care physician is usually covered.
Q: Do private insurance, Medicare and Medicaid pay for hospice care?
A: Most comprehensive private insurance plans have a hospice benefit. Medicare also pays for hospice, and the majority of state Medicaid programs have coverage for hospice care. Hospice care is usually covered as a package, so that the patient and family are not receiving individual bills for every home visit by a physician, nurse or counselor.
Q: If a new treatment option or drug becomes available that looks promising to treat mesothelioma, can I come off of hospice care and resume potentially curative treatment?
A: Some patients do leave hospice care for a variety of reasons and can return to hospice care if they again meet the requirements of having a limited prognosis and a terminal illness. Most oncologists will be happy to offer a promising new treatment option to a patient they previously referred for hospice care.
Q: How can I find palliative care close to me?
A: You can talk to your doctor about how to find palliative care providers or programs in your area.
Q: How can I find hospice organizations close to me?
A: The Hospice Foundation of America allows you to search for hospice organizations in your area.
Questions and Answers from the February Online Support Group
Q: Is draining fluid from the lungs considered a palliative care treatment?
A: Yes, it is considered palliative because the procedure alleviates symptoms. The procedure is called a thoracentesis when performed on the lungs. A paracentesis removes fluid from the peritoneum, the lining of the abdomen. These procedures can effectively relieve pain and improve respiratory function.
Q: What are the symptoms of fluid in the lungs that indicate a person would benefit from a thoracentesis?
A: When someone experiences pain or discomfort while breathing or doing simple actions, it may be time to discuss a thoracentesis with your doctor. The amount of fluid accumulated in the lungs will also influence your doctor’s decision to recommend a thoracentesis. If you experience chest pain or difficulty breathing, let your doctor know, especially if your symptoms increase.
Q: Is peripheral neuropathy a side effect of mesothelioma?
A: Peripheral neuropathy (numbness, tingling or burning sensations felt in the hands, feet or limbs) is most often a side effect of chemotherapy treatment. Chemotherapy is a common treatment for mesothelioma. Not all people who undergo chemotherapy will experience neuropathy.
Effective treatments are available to relieve neuropathy, such as steroids and pain medication. Patients who live in states where medical marijuana is legal can consider the herb for neuropathy. Numerous cancer patients claim marijuana is the most effective treatment they’ve found for neuropathy. Vitamin E may have preventative effects for neuropathy and may be discussed with your oncologist prior to treatment.
This material was shared in the Feb. 12, 2014, mesothelioma online support group.
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