As a person with a blood or bleeding disorder, you might be used to working closely with your health care team and family to manage your disorder. But what happens if you are no longer able to direct your care? There are legal processes for medical decision-making that will protect your health care choices.
This section of Medical Decision-Making covers:
Advanced Directives
Advance directives describe in writing what you, the signee, want to happen if you become unable to make decisions for yourself. They include specific instructions for health providers to communicate your wishes. Advanced directives are only referred to after two physicians declare you unable to make medical decisions.
What kinds of decisions apply?
- Whether to be kept on a ventilator
- Whether to be fed through a feeding tube
- Whether to perform CPR to keep you alive
- How to treat bleeds if incapacitated
- When to place you in palliative care
- Whether to donate your organs
- How you want your remains handled
- And many others
It is also recommended that you create “guiding sentences” that will help your health care providers understand any undefined or questionable aspects of the advanced directive, such as:
- What does “life-sustaining treatment” mean to you?
- When would the benefits of continued treatment outweigh the risks and burdens?
One example might be: “I value cognitive function above all else. I do not want my life prolonged if my clarity of mind and ability to make decisions is markedly lessened and permanent.”
Here are a few items you’ll need for an advance directive:
You can download free, state-specific advance directive forms online or contact your state's Department of Insurance. Advanced directives are often state specific, and many forms are non-transferable between states. Make sure to include forms for each state in which you spend a considerable amount of time.
Advance directives are only valid when signed and dated by witnesses. Check with your state on who may be a valid witness and how many witnesses you need. Some states require several witnesses. States may require one of the witnesses not to be a blood relative or entitled to your estate. A state may also require a person living in a nursing home to have an ombudsman or patient advocate as one of the witnesses. In some states, a notary can serve as your sole witness.
Once you’ve completed your advanced directive, give a copy to your health care provider and family members. Keep the original documents in a safe and secure location with your long-term care and other important documents.
If you want more information on advance directives, go to National Hospice and Palliative Care Organization: Advance Directive Clearinghouse.
Medical Orders
Medical orders are a type of advanced directive. They inform health care providers about your wishes regarding life sustaining medical treatments. They are created by health care providers in collaboration with you. Health care providers must follow these medical orders. Here are some of the most common medical orders:
This medical order lets health care providers know that you do not wish to receive life-saving measures, such as cardiopulmonary resuscitation (CPR) or an automated external defibrillator AED).
This medical order lets health care providers know that you do not wish to be intubated.
This medical order informs emergency medical personnel whether they should apply life-saving measures, such as cardiopulmonary resuscitation (CPR) or should just keep you comfortable. POLSTs are also sometimes called medical orders for life-sustaining treatment (MOLST) or transportable physician orders for patient preferences (TROPP).
Medical Power of Attorney
A medical power of attorney (POA), sometimes called durable power of attorney, is a type of advanced directive. It is a written authorization to represent or act on another's behalf. Your POA doesn’t take effect until your physician concludes that you are unable to make your own decisions.
The person authorized to act on your behalf is called a proxy. This is a person, usually a spouse, partner, or family member, to whom you entrust decision-making power when you are unable to do so. This person cannot be your health care provider. Your proxy must follow your advance directives (if you created them). Make sure you discuss your wishes with your designated proxy early on.
Here are some considerations when choosing a health care proxy:
- The person should be at least 18 years of age.
- They should be familiar with your blood or bleeding disorder and other health conditions.
- They should be willing and able to act as your proxy.
Living Will
A living will is a specific type of advanced directive for people with terminal illnesses. It is a written document that describes your wishes for end-of-life care. The living will informs health care providers about the medical care you want or do not want to receive. This includes how long you want your life prolonged.
Talking to your loved ones about your end-of-life wishes can be difficult. Yet, it is important to ensure that your choices will be honored and will ease their process of grieving. The AARP provides useful resources for these conversations and end-of-life planning.