The conversations you have with your family are the most important part of advance care planning. By discussing your preferences with your family, you allow them opportunities to ask questions about the decisions you would like them to make for you. You may not know where to begin. This information will help you understand the four advance care planning conversations you need to have and decisions you are asking others to make at the end of your life.
When you are thinking about your preferences about the four topics below, it is important to explore how your personal religious or spiritual beliefs may impact your preferences for end-of-life decision-making. You want to ensure that anyone you ask to make end-of-life decisions for you will respect and honor your religious and spiritual beliefs related to end-of-life. Your personal beliefs may also influence decisions you make for others who are at the end of their life. Even if their preference conflicts with your personal religious or spiritual beliefs, you really should honor the other person’s wishes. If you cannot do that, it is important to be honest and ask that person to find a different decision-maker for their advance care plan.
Key Conversations
1. Withholding or withdrawing treatment.
- Withholding Treatment: Withholding treatment means choosing to not start a treatment which may extend a person’s life. This decision should be in line with the person’s wishes if making the decision for another person.
- Withdrawing Treatment: Withdrawing treatments means to make the decision to stop a treatment that has already been started.
- Examples: Examples of treatments you might decide to withhold or withdraw are: cardiopulmonary resuscitation (CPR), dialysis and parenteral or enteral nutrition (“tube feeding”).
- Many religious belief systems allow the withholding or withdrawing of treatments if the treatment is considered to be a burden for the person, dangerous, considered extraordinary or disproportionate to the expected outcome (Bülow, et al., 2008).
2. Death with dignity (also referred to as “aid in dying”).
- In states with a “Death with Dignity Act” or similar legislation, a person that is mentally competent and is terminally ill may choose to request a prescription for a medication from his or her healthcare provider to end the person’s life.
- At the current time, this is not allowed by law in the state of South Dakota.
3. Nutrition for persons in a permanent vegetative state.
- Permanent Vegetative State: A persistent vegetative state is a medical term used to describe an altered level of consciousness; a person may appear awake and even yawn or grunt but has no detectable awareness.
- When a person is in a persistent vegetative state, he or she is unable to eat or drink. Therefore, to maintain life, the person would need to receive artificial nutrition and hydration (food and drink). This can be provided to the person in different ways, including through a tube placed in the person’s stomach or through an IV.
- Artificial nutrition and hydration may be withheld or withdrawn (see above). However, in some states, strong evidence is required to show that the person would want nutrition and hydration to be withheld or withdrawn. This is best documented in an advance directive and living will.
4. Issues of brain death and organ donation.
- Brain death: All functions of the brain stop and will not start again. Machines (such as a ventilator) keep other organs (lungs and heart) functioning.
- A person that has been declared brain dead may be able to donate their organs (liver, kidneys, heart, etc.) to those in need of a new organ.
- Few religions do not allow for the donations of organs, but this should be considered when making the decision to donate organs.
The importance of ensuring that your decision maker clearly understands your preferences on withholding/withdrawing treatment, death with dignity, nutrition for persons in a permanent vegetative state and issues of brain death and organ donation is critical to ensuring that your preferences for end-of-life are honored. You may find it helpful to consult you religious or spiritual advisor to aid you in having these conversations with your friends and family.
Bonus Conversation: Dementia
Dementia is an umbrella term for a group of chronic diseases that impair memory performance and function. Examples of dementia include Alzheimer's Disease (most common type), Creutzfeldt-Jakob Disease, Frontotemporal Dementia, Huntington's Disease, KorsaKoff Syndrome, Lewy Body Dementia, Mixed Dementia, Normal Pressure Hydrocephalus, Parkinson's Disease Dementia, Posterior Cortical Atrophy and Vascular Dementia. It is important for you and your family to explore how you would want to be cared for if you were ever to receive a dementia diagnosis.
Early signs of dementia are not usually noticeable, but it may be confused with rapid-onset conditions, such as delirium caused by a urinary tract infection. Sudden changes to cognitive function in an older adult should be reported to a medical provider immediately, even if that means a visit to the emergency room. The person could have an infection that early diagnosis and treatment could help.
Cures are not available for most forms of dementia. Available treatments for dementia focus on managing symptoms and behaviors (e.g., hoarding, sun downing, etc.). Over time, a person with dementia will become more impaired and lose more of their capacity to reason and understand the world around them. It often progresses until the person with dementia cannot do anything independently, including using the bathroom, bathing, eating or drinking. They will ultimately require 24-hour care and supervision.
