Palliative care is often one of the most important aspects of a mesothelioma patient’s journey, but it is sometimes misunderstood. That’s why we put together this mesothelioma palliative care primer, where you can learn exactly what palliative care is, what it does, and why it is so essential for the wellbeing of mesothelioma patients.
What is Palliative Care?
Palliative care is treatment designed primarily to improve quality of life and to help relieve pain, discomfort, and other symptoms and side effects. Palliative care is often a central part of mesothelioma treatment and care regimens. It may also be referred to as “palliative therapy”, “supportive care”, “palliation”, or “comfort care”.
Mesothelioma and mesothelioma treatment can be painful, and can have adverse effects on a person’s quality of life. Mesothelioma patients may experience nerve pain, gastrointestinal effects, and difficulty breathing, along with psychological conditions like anxiety and depression. Treatment may also cause a wide range of painful, disruptive side effects that palliative care can address.
Importantly, palliative care is not the same thing as hospice care. Both palliative care and hospice care address painful, uncomfortable symptoms to improve quality of life. However, hospice care is primarily for patients expected to have a short time to live (usually 6 months or less), and is generally implemented instead of treatment or when treatment has been discontinued. It is not curative—i.e., it is not designed to fight the cancer itself.
Palliative care, on the other hand, is available to anyone with a serious illness, regardless of prognosis, treatment goals, or life expectancy. It can be started as soon as a patient is diagnosed. Mesothelioma patients can pursue palliative care to support more aggressive curative cancer treatment regimens, and/or to improve their quality of life throughout their mesothelioma journey. Palliative care can go hand-in-hand with active cancer treatment, and can be adapted to fit any mesothelioma patient.
Who provides palliative care for mesothelioma, and how are palliative care plans designed?
Palliative care works best as a coordinated effort from multiple providers on your care team. This can include oncologists, surgeons, nurses and clinical nurse specialists, physical therapists, respiratory therapists, dieticians, pain management experts, and palliation specialists, in addition to social workers, therapists, psychiatrists, and spiritual advisors.
Palliative care takes a holistic approach, treating the whole person, not just their mesothelioma. Treatment providers tailor palliative care plans to each mesothelioma patient’s specific needs and context. They may consider medical factors, such as the type, location, and staging of a patient’s mesothelioma, as well as their other planned treatments and their history of symptoms and side effects. Another factor is eligibility: some mesothelioma patients may be ineligible for certain types of palliative care. For example, around 60% of pleural mesothelioma patients are not eligible for palliative surgery, while pericardial mesothelioma patients are not eligible for palliative radiation.
A palliative care team may also consider the type of support system a patient has, their psychological and social struggles (as well as those of their caretakers and family members), and their treatment and quality of life goals overall.
What are the benefits of palliative care for mesothelioma patients?
In addition to reducing symptoms, palliative care can also have a wide range of additional benefits for mesothelioma patients. Research indicates it may even improve prognosis in some mesothelioma patients, especially if initiated early. Palliative care has also been shown to lower the cost of care (with some studies showing a cost reduction as high as 60%), and has been is linked to improved psychological health, with studies showing lower rates of depression among cancer patients who receive early palliative care.
What are the common types of palliative care for mesothelioma?
Palliative treatment for mesothelioma may include one or more of the following therapies:
- Surgery: Palliative surgery aims to reduce symptoms caused by fluid buildup and/or tumor growth. Palliative surgeries for mesothelioma include:
- Paracentesis, Pericardiocentesis, and Thoracentesis: Minor surgical procedures to drain excess fluid.
- Drainage Implants (catheter or shunt placement): Devices that can be placed to treat recurrent fluid buildup, allowing the patient to drain fluid at home. Shunts allow fluid to move from one part of the body to another, where it’s more likely to be absorbed. Catheters (for example, the PleurX catheter) allow fluid to drain from the body.
- Pleurodesis/Video Assisted Thorascopic Surgery (VATS): A surgery to close the pleural space in pleural mesothelioma patients, permanently preventing fluid buildup.
- Partial Pleurectomy: Surgical removal of part of the pleura (lung lining) to prevent fluid from filling the area.
- Cytoreductive Surgery: Also called “debulking”, this invasive surgery aims to remove as much of a tumor as possible, which can be palliative, curative, or both. It is sometimes followed by intraperitoneal chemotherapy infusions (for peritoneal mesothelioma patients), or by systemic chemotherapy (for pleural mesothelioma patients).
- Chemotherapy: Chemotherapy can be used palliatively for mesothelioma patients, both systemically (IVs or injections into the affected area for 3-4 weeks) or as part of cytoreductive surgery such as HIPEC (Hyperthermic Intraperitoneal Chemotherapy), whichfollows tumor debulking with an infusion of heated chemotherapy drugs into the abdomen. Common chemotherapy drugs for mesothelioma care include:
- Immunotherapy: Immunotherapy helps activate a person’s immune system by modifying a patient’s own cells. Mesothelioma patients often benefit from “checkpoint inhibitor” immunotherapy drugs like pembrolizumab, nivolumab, and ipilimumab, which target cancer cells hiding in “checkpoint” cell proteins PD-1 and CTLA-4. For some mesothelioma patients, immunotherapy can slow or stop tumor growth, significantly improve quality of life, and even improve overall rates of survival. However, some patients experience side effects that may ultimately defeat the purpose. Your mesothelioma care team will assess whether immunotherapy is a good palliative care option for you.
- Radiation: Radiation treatments like EBRT (external beam radiation therapy) and internal brachytherapy can be used palliatively to shrink tumors in pleural mesothelioma patients, relieving the associated pain and breathing problems. There are some side effects, such as tissue damage, skin issues, and fatigue, but many pleural mesothelioma patients report positive palliative effects.
- Other Symptom Interventions: Mesothelioma patients may receive interventions for symptoms specific to their condition. Pleural mesothelioma patients may receive breathing interventions like exercises and supplemental oxygen, as well as cough suppressants. Palliative care may also address constipation and excessive sweating, both of which are common side effects experienced by mesothelioma patients, as well as fatigue and weight loss interventions such as nutritional planning for mesothelioma and steroids.
- Mental Health Therapies: Mental health treatment and counseling is often an integral part of palliative care, addressing the psychiatric, psychological, and spiritual symptoms of mesothelioma. According to one study, 80% of cancer patients receiving palliative mental health treatment reported improved quality of life.
- Targeted Pain Management: Targeted specialized treatments for patients to combat and cope with ongoing pain are essential to palliative care for mesothelioma. Both over-the-counter and prescription pain medication can and often should be utilized to address pain in mesothelioma patients. In addition to medication, patients can utilize other targeted pain treatments like nerve blocks (injections that help block pain), and may benefit from pain management tools like cognitive behavioral refocusing, exercise, massage, and physical therapy.
- Alternative Palliative Care: In addition to the recommended regimen of palliative care designed by a mesothelioma treatment team, patients may also benefit from alternative or holistic palliative care treatments. While these treatments are not intended to replace standard medical palliative care, they may supplement that care to improve quality of life. Common alternative palliative care treatments for mesothelioma include acupuncture, medication, reiki, tai chi, yoga, and hypnosis, among others.
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