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Medical Decision Making

As someone with a bleeding disorder, you’re used to working closely with your health care team and family to make sure your disorder is well managed. But what happens if you’re unable to direct your care anymore?

Setting down your concerns and directives means you have decided what your wishes are, how you want them carried out, and who you might want to make additional decisions for you.

Medical decision-making is a process which involves a great deal of legality. You’ll need to fill out an array of forms and file them with the state. Forms you need to fill out will vary depending on your individual situation and where you live.

Here are some of the forms you will likely need to fill out:

Advance Directives

Also known as living wills, advance directives make clear the type of care you want for yourself in extreme circumstances, and 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

Some experts also recommend that you create a “guiding sentence” that will help your medical team deal with any undefined or questionable aspects of the will, 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 to put together an advance directive:

  • A copy of your state’s advance directive forms. You can download free, state-specific advance directive forms online or contact your state's Department of Insurance. Because some forms are non-transferable between states, be sure to include forms for any state in which you spend a considerable amount of time.
  • Witnesses or a notary. 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, with one witness to not 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 living will, give a copy to your health care provider and family members, and keep the documents in a safe and secure location with your long-term care and other important documents.

Durable Power of Attorney

A power of attorney is a written authorization to represent or act on another's behalf. The one authorized to act is called a proxy, this is a person, usually a spouse or family member, to whom you entrust decision-making power when you are unable to make decisions. This person is obligated to follow your advance directives as put forth in your medical decision-making forms.

Like advance directives, power of attorney doesn’t take effect until your physician concludes that you are unable to make your own decisions. This is a major responsibility. You should discuss your wishes in detail with your chosen proxy.

Here are some considerations when choosing a health care proxy:

  • The person should be at least 18 years of age.
  • He or she should be familiar with your bleeding disorder and other health conditions.
  • That person should be willing and able to act as your proxy.

And even though you trust your health care providers at your hemophilia treatment center (HTC), your proxy cannot be your doctor, nurse, or an employee of your doctor or the facility where you receive care. Many states also require that you select a second or third choice for power of attorney in case your first choice is unable or unwilling to perform the duties of proxy.

Creating an advance directive to choose your power of attorney is a similar process to choosing your proxy. Follow the steps outlined above for creating an advance directive to choose your power of attorney.

For more information on End of Life Checklists and Forms, go to End of Life Checklists and Forms.