Mesothelioma Hospice Care
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Mesothelioma hospice care provides palliative treatments and end-of-life support for cancer patients. Although it can be a difficult transition, mesothelioma patients benefit from hospice services. Hospice includes medical, psychological, social, spiritual, and practical support at home or in a hospice facility.
What Is Hospice Care?
In hospice care, a team of healthcare workers provides care and support for patients nearing the end of life. Their primary goal is to make a dying patient as comfortable as possible rather than working to cure the illness.[1]
The focus on patients in hospice is managing pain and supporting any spiritual, social, mental health, and physical needs to improve quality of life for the time left.[1]
What Is the Difference Between a Hospice Facility and Hospice Home Care?
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. There are benefits and drawbacks to each option:
- With home hospice 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. Most care is provided by the family member, which can be comforting to the patient.
- In a hospice facility, the hospice team may be available around the clock or only for part of the day. At a facility dedicated completely to hospice care, the patient receives twenty-four-hour care from professional caregivers, which is beneficial for patient comfort and symptom management. Family members can visit and provide some supportive care.
When patients are very ill or critical, hospice care may be provided in hospitals or nursing homes.
Is Hospice the Same as Palliative Care?
While they have several things in common, hospice and palliative care are not the same thing. Both types of care have the goal of making a patient more comfortable rather than treating or curing an illness.
Hospice is restricted to end-of-life situations, even if the patient has a chance of getting better. Palliative care can be used at any stage of an illness. A patient may receive palliative care while also getting treatment for the illness.
Palliative care is one part of a team and approach to care. It can be part of regular treatment or part of the hospice team.
The Professional Hospice Care Team
No matter where hospice care takes place, it is administered by a team of experts:[1]
- Palliative care doctors, and other doctors
- Nurses
- Social workers
- Home health aides
- Pharmacists
- Counselors and therapists
- Spiritual counselors
- Volunteers
The medical professionals 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 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 patients comfortable rather than curing their disease or keeping them alive.[2]
Palliative care includes medical treatments like:
- Surgery
- Minor procedures
- Medications
- Pain management
Hospice services also include non-medical care:[3]
- Therapies, including physical, occupational, speech, music, and art therapy
- Complementary and alternative medical practices, like acupuncture, massage, and yoga
- Counseling, psychotherapy, and spiritual services
- Non-medical services and activities to enhance the patient’s overall quality of life
- Assistance with end-of-life medical, financial, and legal arrangements
Hospice also includes personal care and hygiene. When a patient cannot maintain their independence, hospice caregivers will help with bathing, going to the bathroom, dressing, and other personal needs.[3]
Hospice care also typically provides nutrition and diet planning. They can guide the family when the loved one does not desire to eat as much.[3]
What to Expect When Someone Goes Into Hospice Care
This is an uncertain time and transition both for the patient and their loved ones. Knowing what hospice means, this can be difficult to accept. It helps to understand what living with mesothelioma in hospice is like and how everyone benefits.
How Does Hospice Benefit the Patient?
Studies are clear that patients benefit from entering hospice care in several ways:[4]
- Greater relief from pain as compared to being at home
- Improved emotional health and sense of community and altruism
- Feeling more at peace with dying and having more control over the process
- Relief at being less of a burden to family
- Overall improved satisfaction and quality of life
How Hospice Benefits Loved Ones
Hospice revolves around the dying patient. Hospice can also benefit caregivers and families. 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. It provides guidance and counseling to families and loved ones who need help.[5]
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. It can also be a less expensive alternative to hospital stays.[5]
Bereavement counselors in hospice help family and friends cope with the stress of watching a loved one deteriorate and die. After the patient passes, they are also available to help loved ones work through the loss and its accompanying grief.
What Happens in the Final Stages of Mesothelioma?
Both patients and their loved ones might want to know exactly what will happen at the end of life with mesothelioma. It’s difficult to think about, but also helps to have the information.
During stage 4 mesothelioma, cancer has spread to more distant tissues and organs. This means it causes new symptoms and generally more severe symptoms:[6]
- More severe pain and in more locations
- Extreme fatigue
- Muscle wasting and weakness
- Weight loss
- Rattling breath
- Sleeping more
- Mental confusion
How to Choose the Right Hospice Service
There are plenty of options when the time has come to provide hospice care for a loved one with mesothelioma. The patient should have as much say in the decision as possible, but family caregivers may need to make the final choice.
Factors to Consider When Choosing Hospice
Loved ones want to choose the best care, and there are several factors to consider:
- You may need a referral from your medical team. They may also be able to recommend facilities and services.
- Determine the level of care your loved one needs. Hospice can be outpatient, but many people need to live in a facility.
- Narrow your options down by practical limitations such as location, cost, and insurance coverage.
- Take a tour of the hospice facilities under consideration and talk with residents and staff.
- Let your loved one be a part of this decision.
Hospice Resources
Several organizations offer resources and information about finding hospice:
- National Association for Home Care and Hospice. This group advocates for hospice patients and staff. You can learn more about patient rights here and what constitutes quality hospice care.
- Eldercare Locator. The U.S. Administration on Aging offers this free service to help older adults find needed services.
- Hospice Foundation of America. HFA provides information about hospice care, including when to consider hospice services and how to find care. It also offers discussion boards.
- National Hospice and Palliative Care Organization. You can find important information here about preparing for hospice and finding care. There is also a search tool to connect patients and families to services and facilities.
Paying for Hospice Care
Financial burdens at the end of life can be an additional stress for patients and their families. Hospice is often a lower-cost alternative to nursing homes and hospitals.
Most people in hospice are at least partly covered by Medicare. The patient must qualify for Medicare Part A. If they do, it can cover things like medical care, nursing, medical equipment, prescription drugs, and home aide services.[7]
If you are facing end-of-life care, whether as a patient or a loved one, the decision is not easy. However, a patient needs to receive the best palliative and supportive care possible.
Get Your FREE Mesothelioma PacketPage 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.