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Advanced Planning for MSA

Directives, Hospice, and Brain Donation

Because MSA is at this time a terminal disease with mean patient survival of 6 to 10 years after the onset of symptoms, patients and families should begin to make decisions regarding advanced directives, finances, hospice care, and the possibility of brain donation, if so desired.

Advanced Directives

Advanced directives may include a living will, the designation of a power of attorney for health care, or in some states, a combination of the two. Living will documents allow a patient to specifically decide on certain treatment options, such as respiratory ventilator use, placement of feeding tubes, cardiopulmonary resuscitation (CPR), or deciding to avoid resuscitation (“do not resuscitate,” or DNR) should the patient stop breathing or the heart stop beating.

Patients may complete a document designating a family member or friend to have power of attorney for health care (POA). The POA for health care, after discussion with the patient to understand the patient’s wishes regarding medical treatment, grants another person the right to make decisions regarding such treatment when the patient becomes unable to do so. The POA for health care is separate from the POA for finances, and someone with POA only for health care may not make any decisions regarding patient finances.

In some states, a document may be available that combines both designation of a POA for health care and concrete decisions regarding certain medical procedures, even noting patient preferences for things the patient may want when near death, such as favorite music, prayers, rituals, or pastoral visits.

Palliative Care/Hospice

Hospice care may differ from place to place. Several hospice agencies may be available for patients in each city or region. Patients and families should become familiar early on with the hospice care in their area. An evaluation for the appropriateness of hospice is done by a home visit. Patients may be re-evaluated as conditions deteriorate. Many hospice agencies accept Medicare and private insurance payment, and other funding may be available.

Hospice services are usually made available if the patient has a prognosis of survival of less than 6 months. If patients survive beyond 6 months, hospice won’t be discontinued, though hospitce medical director periodically reviews each patient’s case. Once a patient is enrolled in a hospice program, the agency will cover anything related to the terminal illness, including medical equipment and symptom management. Hospice agencies can provide nursing visits for evaluation and medication management, home health aides for bathing and hygiene, and even chaplain services if desired. Bereavement counseling is available to family for up to 13 months after death.

Learn more about hospice.

Brain Donation

Because MSA is a rare disease with no cause, cure, or specific tests for definitive diagnosis, many patients may wish to donate their brains for MSA research. The agencies that receive the brain will send the family a report to confirm the diagnosis once testing is completed. Brain donation requires a specific protocol for preservation of the brain until it is harvested, a process that must be done within 24 to 48 hours after death, in most cases. Because timing is critical, arrangements for brain donation and harvest should be in place before the patient is near death. The Brain Support Network provides valuable support and resources to guide patients and families in developing a plan for brain donation. For details, please see the following button:



For all references listed in the About MSA section please download the MSA Coalition's "MSA - What You Need to Know"

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