General Considerations

General ConsiderationsAdvance care planning is a process of discussion with a goal of making plans for a time when an individual is unable to make his or her own medical decisions. It is recommended planning for adults of all ages and stages of health, and is a valuable process to align your values, wishes, and preferences with medical care you will receive.

Advance care planning is usually used to create legal documents called health care directives, or advance directives. There are two types. The living will outlines instructions and guidelines for family and medical professionals to follow if the person is unable to make decisions on their own. It provides others with information about your wishes, relieving the burden of needless speculation. A power of attorney for health care, or medical power of attorney, names someone to make medical decisions for you should you lose the ability to make your own decisions. This person must make health care decisions according to your wishes and in your best interest.

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In 2016, the Parkinson’s Foundation hosted a Caregiver Summit for that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinson’s. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.

When to Plan

Advanced Parkinson’s symptoms can result in complications related to immobility, falls, and difficulty swallowing. Ideally, an advance care planning discussion should be initiated at a time when the person with Parkinson’s can fully participate and share their wishes regarding what types of medical care they want to receive in the event of life-threatening symptoms. It is never too early to plan. The Conversation Project can help you and the person with Parkinson’s think about and begin to discuss your wishes for end-of-life care.

Who Should Be Involved

Frank, open discussions can be difficult, and not all people are comfortable talking about this delicate subject with others. Although it is not always easy, many people report a sense of relief and optimism after having the opportunity to share their thoughts and wishes. A social worker, lawyer, chaplain or other medical team representative with experience in advance care planning may be included in your family’s discussion if you would find this helpful. These professionals can also help create the necessary documents and assist with obtaining proper signatures and authorizations required to create a legal document. To get you started, CaringInfo provides advance directives and instructions for each state. Once completed, health care directives should be shared with your medical team

Be Prepared

Some regions in the United States use a POLST (Physician Orders for Life-Sustaining Treatment) form to communicate information to medical professionals. A POLST is a signed medical order that communicates patient preferences to health care providers during an emergency. It is recommended for those with complicated medical problems who have limited life expectancy, or would like to set limits on care received. It is immediately accessible and travels with the patient between their home and other care settings. Check with your medical provider to see if POLST forms are used in your area, and if your loved one with Parkinson’s should have a form created.

Caregivers often wish to understand how a person’s journey with Parkinson’s will end. Each person with Parkinson’s is unique and no one is able to provide clear answers to these questions. Although no one can say with certainty, continued weight loss, recurrent infections, and withdrawal from daily interactions with others may signal impending changes. Maintain open communication with your physician and the medical team, so they can answer questions and offer continued support as needed.

Tip sheets to download
Resources on the web
Groups that can help

Caregiver Story

Life Beyond This Life