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Mesothelioma is a rare and aggressive cancer caused by asbestos exposure. Rarely curable, most patients will not live long after receiving a diagnosis. Learning and processing this news can be difficult and hard to think about. In addition to the emotional turmoil associated with this disease, patients must also cope with symptoms while being unable to fully care for themselves.
Although the medical team may not be able to provide medication or other forms of treatment to alter the duration of life, what they can offer is best supportive care. This is the term used to describe the form of treatment that focuses on symptom management and goals of care for the patient and family. Part of this conversation may also include specific details about the death and dying process. Hospice is a form of support that is provided to patients that are estimated to have less than six months to live. The focus is on providing the physical, medical, and spiritual support during the dying process.
What is Hospice Care?
There are many end-of-life decisions for a mesothelioma patient to make. One important decision is what type of care they want. Many choose hospice care. In hospice care, a team of health care workers provide care and support. Their primary goal is to make a dying patient as comfortable as possible rather than working to cure the illness. It is for anyone with a terminal illness that is expected to die in the next six months. Even if you live longer, you can still receive hospice services. You can always remove yourself from hospice and then enroll again later.
Mesothelioma Hospice Home Care vs. Facility
Hospice care services are not restricted to any one location. A team may administer care at a patient’s home or in a hospital, nursing home, or in a dedicated hospice facility. With home care, the primary caregiver is probably a family member supported by members of a hospice care team. These other members may visit the patient regularly or irregularly. However, most care is provided by the family member.
In a patient care facility, the hospice team may available around the clock or only for part of the day. At a facility dedicated completely to hospice care, the patient receives 24-hour care from professional caregivers. Family members are usually allowed to also provide support and assistance to the patient.
The Professional Hospice Care Team
No matter where hospice care takes place, it is administered by a team of experts in symptom management of those in the dying process who know how to also support the family. The team is usually comprised of a palliative care doctor, advanced practice providers, registered nurses and intake coordinators. They help manage medications and other support services.
The team also includes nurses, health aides, and medical assistants. These are all trained medical professionals who provide hands-on care. They administer medications, coordinate care, communicate with doctors, and help patients dress, bathe, and eat. Volunteers may also work with hospice patients, providing services like transportation, food preparation, and cleaning.
Social workers, counselors, therapists, and spiritual leaders also provide hospice care to patients with non-medical support. These professionals help hospice patients cope with the emotional and spiritual aspects of facing death. Other professionals on a hospice team may include occupational therapists, art and music therapists, physical therapists, and others.
Services Hospice Care Provides for Mesothelioma Patients
Hospice care offers a wide range of services and support for end-of-life patients. The primary service is palliative medical care. Palliative care is medical care dedicated to making a patient comfortable rather than curing their disease or keeping them alive. Surgery, minor procedures, and medications can be used to manage symptoms.
Hospice services also include non-medical care. This can include several forms of therapy, like physical, occupational, speech, music, and art therapies. It may also include alternative medical practices, like acupuncture, massage and yoga. Non-medical services are dedicated to enhancing the patient’s overall quality of life.
Hospice also includes personal care and hygiene. When a patient is unable to maintain their independence, hospice caregivers will help with bathing, going to the bathroom, dressing, and other personal needs. Hospice care also typically provides nutrition and diet planning. They can also provide guidance to the family when the loved one does not desire as much eating. Finally, hospice provides psychological and spiritual support. Therapists, psychologists, social workers, priests, chaplains, and rabbis, are on usually available to counsel patients and their families.
How Hospice Benefits Loved Ones
Hospice care is primarily for the dying patient. However, it can benefit the patient’s loved ones as well. This care may provide peace for loved ones watching a family member suffer and die. Giving patients the best care and support helps the family cope with the loss. Hospice care also provides loved ones with practical assistance. Being a family caregiver is stressful and emotionally draining. Hospice can step in when family caregivers need a break.
Hospice care teams include bereavement counselors who work mostly with a patient’s loved ones. Bereavement counselors help family and friends cope with the stress of watching a loved one deteriorate and die. They are also available after the patient passes to help loved ones work through the loss and its accompanying grief.
Choosing Hospice Services
When the time has come to provide hospice care for a loved one with mesothelioma, there are plenty of options. The patient should have as much say in the decision as possible, but family caregivers may need to make the final choice. Practical concerns like cost and location may dictate the final decision. Within the necessary parameters, loved ones want to choose the best care, and there are several factors to consider.
One factor to consider is whether or not a residential facility makes sense. Consider if the patient would prefer to be at home and if that option is practical. When choosing a hospice care team, families should ask questions and be sure the care providers make the patient feel at ease. Cost is another consideration. Health insurance and finances may limit a family’s options for choosing a hospice team.
If you are facing end-of-life care, whether as the patient or a loved one, the decision is not easy. However, it is important for a patient to receive the best palliative and supportive care possible.
Page Medically Reviewed and Edited by Anne Courtney, AOCNP, DNP
Anne Courtney has a Doctor of Nursing Practice degree and is an Advanced Oncology Certified Nurse Practitioner. She has years of oncology experience working with patients with malignant mesothelioma, as well as other types of cancer. Dr. Courtney currently works at University of Texas LIVESTRONG Cancer Institutes.