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Preparing for the End
Legal, financial and health-related planning is something all of us ought to do, regardless of our health status. These documents define how you want to be medically cared for in case you are not able to speak for yourself. People often assume that their loved ones know their wishes about medical care but have never had a discussion about it.
With CJD, life-planning decisions should be discussed as early as possible so your loved one can thoughtfully consider options and voice their values. At the end stage of the disease, patients with CJD will be bed-bound, often not speaking.
Some of the issues that you may need to consider include money management, protection of assets, and decisions about appropriate places to live as care needs change. It is recommended that you appoint a person who will know where you keep important papers and have a plan for handling legal and financial matters in the event you are unable to do so. Again, it is best to consider these issues while the person with dementia is able to participate in discussions and planning.
Legal documents commonly used include:- A living will that outlines what type of care your loved one would like at the end of life, including the use of artificial life support, mechanical ventilators, cardiopulmonary resuscitation (CPR), feeding tubes, etc.
- Durable power of attorney to appoint a trusted agent to make all legal and financial decisions once the person is unable to make decisions themselves
- Living trusts to manage assets and investments through an agent
- A will that documents an executor (person who will manage the estate) and the beneficiaries (those who receive the estate at the time of the person’s death).
- If I have difficulty breathing, do I want to be placed on a respirator (an artificial breathing machine)?
- If I develop an infection or pneumonia, do I wish to be treated or just receive comfort care?
- If I can no longer swallow safely, do I wish to have a feeding tube placed into my stomach or to receive nutrition through an IV?
- If my heart stops beating, do I wish to receive CPR?
- Autopsy
The UCSF Memory and Aging Center provides a brain autopsy service for patients registered and seen at UCSF.
Autopsy is the only way to confirm the CJD diagnosis and can be invaluable to both families and researchers. It can also clarify which type of CJD your loved one had.
- Creutzfeldt-Jakob disease can only be proven with certainty through an autopsy. The diagnosis given in a clinical setting is based on neurological, neuropsychological and radiological assessments. However, this diagnosis is never definitive before pathologically proven by autopsy. In rare circumstances a brain biopsy might be performed, but this is a risky procedure and results may not be accurate. By confirming or refuting our clinical diagnosis, the autopsy improves our ability to diagnose CJD earlier and more accurately.
- Without brain tissue donations, the development of better treatment for future generations would be severely limited. CJD tissue is rare and greatly needed.
- With an autopsy, the effects of CJD on the brain can be studied in detail and evaluated visually.
An autopsy can provide closure for family members as otherwise the final diagnosis will never be known for certain. Autopsy provides answers that help the grieving process.
An autopsy does not delay or complicate any funeral, cremation, or burial plans. Removal of the brain does not prevent an open casket, embalming or other traditional funeral arrangements. In most cases, the autopsy plan is compatible with the family’s choice of funeral home and religious practices. Requests to withdraw from the autopsy program will be honored at any time, even after prior agreement to participate.
For more information or if you find resistance from medical or funerary staff, please contact our Autopsy Coordinator.
Features: - Resources
For more detailed information on these topics:
- California Coalition for Compassionate Care: a statewide partnership of over 60 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California
- Caring Connections: a program of the National Hospice and Palliative Care Organization (NHPCO) that provides downloadable state-specific living will and healthcare power of attorney forms
- Compassion and Choices: a nonprofit organization working to improve care and expand choice at the end of life.
- End-of-Life Decision-Making: an article from the Family Caregiver Alliance that lists a number of common questions and links to other resources
- Legal and Financial articles: from CareGuide@Home
- Legal Issues in Planning for Incapacity: a question and answer on legal issues from the Family Caregiver Alliance
- Talking About Death: an article from the National Caregivers Library with advice on talking about death and final wishes