Crafting an Advanced Health Directive for Dementia: Key Considerations
An advanced health directive (AHD) is an essential document that outlines an individual’s preferences for medical treatment, particularly in situations where they are unable to make decisions for themselves due to illnesses like dementia. Crafting an AHD when diagnosed with dementia is crucial as it ensures that the person’s healthcare wishes are respected and followed as their condition progresses. This article delves into the important aspects to include in an advanced health directive for someone with dementia.
7/24/20242 min read
1. Understanding the Purpose of an Advanced Health Directive
An advanced health directive is a legal document that communicates an individual's healthcare preferences to family and healthcare providers. It includes decisions about medical treatments you would or would not want to be used to keep you alive, as well as other decisions such as pain management or organ donation. For someone with dementia, whose decision-making ability will likely deteriorate over time, an AHD is particularly important.
2. Components of an Advanced Health Directive
Specific Medical Interventions
Resuscitation: Specifies whether or not you wish to receive CPR if your breathing or heartbeat stops.
Mechanical Ventilation: Determines if and when you would want to use a machine to take over breathing if you're unable to do so on your own.
Tube Feeding: Includes decisions about receiving nutrients and fluids via a tube.
Dialysis: Outlines whether to accept or refuse dialysis to handle kidney failure.
Antibiotics or Antiviral Medications: Indicates whether you want to accept treatments for infections if you are in the late stages of dementia.
Pain Management and Palliative Care
Pain Control: Details preferences for pain management, even if such choices may hasten death.
Palliative Care: States the extent of comfort care, focusing on alleviating pain and ensuring comfort rather than prolonging life.
End-of-Life Care
Hospice Care: Specifies at what point to consider hospice care, emphasizing comfort over life-extending treatments.
Living Arrangements: Preferences for staying at home, in a hospital, in a hospice environment, or a specialized nursing facility.
3. Legal Considerations
To ensure that an advanced health directive is legally binding, certain criteria must be met:
Legal Requirements: These vary by state or country but generally include having the document witnessed and/or notarized.
Review and Updates: Regularly review the AHD to ensure it still reflects your wishes, especially after any significant changes in your health condition.
4. Discussing Your Wishes
With Family-
Open Discussions: Regular, open discussions with family members about your wishes, guided by the contents of your AHD, can ease the emotional burden on your loved ones and reduce potential conflicts or confusion in the future.
With Healthcare Providers-
Medical Team: Ensure that your primary care provider and any specialists, such as neurologists or geriatricians, are aware of and have copies of your AHD. They can also provide advice on the medical implications of your choices.
5. Incorporating Personal Values and Life Goals
Quality of Life Considerations: Define what quality of life means to you in the context of dementia progression, such as the ability to recognize family members or the level of independence.
Religious and Ethical Beliefs: Reflect any religious or ethical values that should guide end-of-life care.
6. Choosing a Healthcare Proxy
Selection of Proxy: Choose someone who understands your healthcare philosophy and is willing to advocate on your behalf. This person should be emotionally stable, available, and willing to discuss difficult issues.
Alternate Proxies: Appoint one or more alternates in case the primary proxy is unable to perform their duties.
7. Practical Steps to Implementing an AHD
Documentation: Store the AHD in an accessible but secure location. Register the document with your state registry if available, and provide copies to your healthcare proxy, family members, and healthcare providers.
Medical Alert Bracelet: Consider wearing a medical alert bracelet that indicates you have an AHD, which can be critical in emergency situations.
Conclusion
An advanced health directive is a vital tool for anyone, but especially for individuals diagnosed with dementia. It empowers you to make crucial decisions about your healthcare in advance, reflecting your values, wishes, and medical preferences. By carefully crafting and discussing an AHD, individuals with dementia can ensure that their healthcare decisions remain in their own hands, even as their ability to communicate those decisions declines.