End of Life Care for Mesothelioma Patients

Facts About Mesothelioma

Mesothelioma is an incurable cancer primarily associated with exposure to asbestos. Asbestos was used in a wide variety of construction and manufacturing materials because of its heat, fire, and chemical resistant properties. Many workers in the fields of ship building and repair, construction, mechanics, and building repair experienced occupational exposure to the deadly mineral.

When inhaled, asbestos fibers affect the membranes surrounding the lungs, heart or abdomen and can cause mesothelioma. Symptoms of the mesothelioma often are general and do not occur until 10 to 60 years after exposure, therefore this type of cancer is often not diagnosed until it has advanced to late stages. Although some patients diagnosed with mesothelioma have extended life expectancy, usual prognosis is less than a year.

End of Life Care

Central to treating mesothelioma is palliative and end of life care. End of life care focuses on making the patient comfortable and relieving pain. It also involves making decisions about the treatments patients want to receive and appointing someone to make those decisions if patients are unable to speak for themselves. Some patients remain at home and others enter a hospital or care facility.

If you or a loved one has been diagnosed with malignant mesothelioma, getting end of life care is essential to improving quality of life and easing the process of dying. Services can help patients and families with the medical, psychological and spiritual issues surrounding dying. Central to quality end of life care is good communication between the patient, physician and family members. Three other components are:

• Assessment & care planning
• Symptom management
• Advanced care planning

Discussions involving end of life care center around the choices, values and priorities of the mesothelioma patient. They should take into account specific circumstances, wishes and priorities of the individual, their family and friends. Sensitive, informed, and open communication between patients, families, friends, carers, and members of the medical team is essential in all planning. Physicians should be able to inform patients and their families about the range of options and resources available to them, including talking with clergy or social workers specializing in end of life situations.

Many mesothelioma patients whose preference is to die in their home end up dying in the hospital and experience care that is far from ideal. Patients who have not had end of life care discussions often received treatments that are not in their best interest or according to their wishes. Many staff members of hospitals are not trained in providing care for the dying, resulting in decisions being made that create more pain and suffering not only for the patient but for surviving loved ones as well.

Quality end of life care needs to be discussed and assessed prior to incapacitation or death so the needs and wishes of the patient can be ascertained and a plan can be made. Having an end of life care plan often leads to better coordination of services, availability of palliative care, and trained staff that ensures the patient will have the death they choose.

An end of life care plan will include the mesothelioma patient’s treatment and intervention preferences and state in advance refusal of specific unwanted treatments. The plan should take into consideration the patient’s condition, living arrangements, social circumstances, mental health, and cultural and religious values.

End of Life Care Conversations

It can be awkward to initiate end of life care conversations and some patients may not want to discuss their mortality, yet without such plans in place, care at the end of life may cause unnecessary or prolonged suffering. Often a health professional or physician most familiar with the mesothelioma patient’s treatment is the most appropriate person to initiate or lead the difficult discussion between patient, family, and medical team. Coordinated care and shared communication of an end of life care plan increases the chances that a patient’s wishes will be abided by. For many mesothelioma patients, functional disability occurs in the two months prior to death. Although difficult, it is best to bring up the subject of end of life before this time while the patient is of sound mind and can still clearly communicate their preferences regarding treatments, interventions and care.

Studies have shown that patients who talked about their preferences for end of life care with their families and medical team:

• Had less fear and anxiety
• Felt empowered and that they had more ability to influence and direct their medical care
• Believed that family members and treating medical physicians had a better understanding of their wishes
• Had more understanding and greater comfort level
• Were more likely to involve Hospice end of life care and die in the location of their choice

Having ongoing discussions enabled patients, family members and physicians to come to agreement about patient’s preferences for providing or withholding treatments under specific circumstances.

Signs of Death

Certain signs can help caregivers and family know that a person is nearing death. Some symptoms include:

• Slipping in and out of consciousness
• Confusion or inability to express thoughts clearly
• Drowsiness or increased sleep and unresponsiveness
• Becoming more withdrawn and decreased socialization
• Decreased need or ability to take in food or fluid
• Skin is cool to the touch or bluish in color
• Increased difficulty controlling pain
• Involuntary sounds or movements and loss of reflexes

Quality End of Life Care

Good end of life care addresses not only ensuring that the mesothelioma patient’s wishes are followed, but also being responsive and sensitive to carers and surviving family and friends. The aim of quality end of life care is to avoid needless suffering and to permit experiences that have positive meaning. Any measures taken to improve satisfaction in the experience of dying, caring and bereavement are critical and can make all the difference.

If you or a loved one has been diagnosed with mesothelioma, please take action to have the difficult discussions about what type of end of life care you prefer and what agencies are available in your area, such as hospice, that can best take care of you and provide medical care according to your wishes.