Many Americans experience ALS, Alzheimer’s disease, Huntington’s disease, Parkinson’s disease, multiple sclerosis (MS) or other types of chronic diseases. If you have a chronic illness, your personal planning will need to involve careful consideration of your medical and physical condition.
If you or a loved one has one of these conditions, it is important to communicate with your attorney and other advisors about your condition. There are specific planning options both during life and for your testamentary plan that should be considered.
ALS (Lou Gehrig’s disease) is a disease that progressively affects a person’s ability to control muscle movement. Symptoms include muscle twitching and cramping. Most ALS victims will eventually need a ventilator for breathing, but often will be quite clear-headed during their lifetime.
Alzheimer’s is a disease with a progressive reduction in mental capacity. Mild Alzheimer’s may be identified by memory lapse and forgetfulness. As Alzheimer’s progresses, the individual begins to lose speech facility, forgets to follow normal personal cleanliness habits and loses control. Often, the Alzheimer’s sufferer eventually loses the ability to recognize family members and other loved ones.
Huntington’s disease is an inherited disorder. The person with Huntington’s disease may have great difficulty with coordination and eventually will suffer from dementia and require full-time care.
Parkinson’s disease is a disorder of the nervous system. It can lead to progressive deterioration of both the physical body and mental capabilities. Because there is great variation with the disease, some individuals with treatment are able to live reasonably long lives.
Multiple sclerosis(MS) is also a disorder of the nervous system. There is progressive damage to nerve fibers that leads to physical and mental disability. MS may be moderate at first but tends to lead to attacks that can cause progressive deterioration. MS may range from fairly mild to quite severe and very debilitating.
These five and other chronic diseases are all unique. Some afflict the body and others reduce the capabilities of the mind. For example, Alzheimer’s has greater impact on mental ability, while ALS victims are often suffering in body but may be quite clear in mind. An attorney and other advisors need to understand the conditions sufficiently so that your documents and plans reflect your particular circumstance.
The principal documents for any chronic illness are a durable power of attorney for healthcare, a living will and a HIPAA release. In many states, the durable power of attorney for healthcare and living will are combined into one document described as an advance directive.
Durable Power of Attorney for Healthcare
If you have a chronic illness, particularly one that leads to loss of mental capacity, it is very important to have a designated person who can make medical decisions for you. In the event that you are unable to reason or communicate, your designated advisor must discuss your medical care with doctors and hospital staff.
A durable power of attorney for healthcare allows you to designate a trusted person to speak to the doctors on your behalf. This person is qualified to make your medical decisions if required.
Whom Should You Appoint?
For a person with a chronic illness, this can be a challenging decision. You would like to select someone who understands your medical condition and your preferences about care, such as a family member or friend. Adult children are often selected, but may experience great emotional trauma in making an end‑of‑life decision. A friend may be a good choice if you do not have a child who feels willing or emotionally capable of making those decisions.
Generally, you will select a healthcare proxy agent and a successor. It is usually not to select two persons as your proxy agent—they might disagree at a critical time while you are in need of an immediate decision.
Living Will
The advance of medical science has enabled doctors to keep people alive for extended periods of time, even if there is virtually no possibility of recovery. If you are in this circumstance, a living will provides guidance to your doctors, describing your preferences if you are potentially in your last weeks or days of life. For example, the living will can discuss whether or not heroic measures will be used to sustain your life. If you have an irreversible condition with no chance of recovery, the living will also specifies whether nutrition and hydration will be maintained.
If you suffer from one of the chronic illnesses that affect mental capacity, it may be important for you to sign your living will before you have mental deterioration. Many Alzheimer’s patients and other individuals with great mental deterioration are no longer capable of signing a living will.
A person with chronic illness needs both a living will and a healthcare proxy agent. Your healthcare proxy agent can make decisions regarding your care, even if you are not near death.
Health Insurance Portability and Accountability Act (HIPAA)
In 1996, Congress passed the Health Insurance Portability and Accountability Act – HIPPA – designed to protect your rights to medical information. Your doctor and other medical providers will frequently acquire extensive background information and treatment information for your chronic illness. Under the HIPAA rules, there are safeguards to protect this personal medical information. A doctor, medical center or other provider may not disclose this information, particularly to someone who will use it for marketing or similar purposes.
However, you may wish to have your medical information released to your professional advisors so they can make appropriate decisions for you. In order to receive this information, your healthcare proxy must have a formal release from you.
The HIPAA release, which will be in writing, should describe the health information that may be released to the person. It may provide a general list of medical centers or providers or could have an open-ended release for any hospital or medical provider and may include a termination date. After you sign your HIPAA release, you can always revoke the release and sign a new one.
Feel free to contact Attorney Matz for a consultation on these estate planning considerations.