Family Caregiving Tips

There are few conversations more difficult to begin than discussing advance directives. These directives reflect a loved one’s desires for medical treatment when they are unable to decide for themselves.

No one can force anyone to have an advance directive completed. There are no state laws that requires anyone to have one. It is a completely optional document.

However, when a directive is not available and a physician feels the patient is unable or cannot make decision, the decision must be made by the patient’s immediate family, friends, guardian or caregiver. In some cases, legal surrogates, trustees or other physicians are appointed to make an authoritative decision.

Were you in a coma, would you want a spouse, partner or a child to make a decision about your condition? Having to make a life or death decision can have an emotional and psychological effect which can take years to resolve. Also, the decision may not agree with your own preferences or beliefs. An advance directive prevents doubts, guilt and unintended consequences for yourself and others.

Who Should Have One

In July 2017, the Health Affairs Journal cited a study which revealed that only one-third of the American population has a living will. The low percentage may be due to a common belief that only the elderly should have one. That’s an unwise perception.

There are situations where an existing advance directive would be critical to have. Some examples are:

• A patient in a persistent vegetative condition or comatose state.
• A loved one with dementia, Alzheimer’s or brain damage that impairs their cognitive abilities.
• A member of the military that may suffer from a debilitating state and unable to articulate their wishes.
• Someone that must rely on a ventilator and has difficulty expressing their thoughts.
• A patient experiencing physical failure such as kidney, cardiac or liver failure.
• A loved one with a chronic or terminal medical condition that makes verbal expression difficult.

What Decisions Are Included

A living will and a power of attorney for healthcare are distinct documents. However, both are considered to be advanced directives. No matter the name they can include provisions for:

• The level of care acceptable to assure comfort and relief from pain.
• The type of nutrition and hydration that will be provided to the loved one.
• The limits of life-sustaining treatment as desired by the loved one.
• The loved one’s preferences for organ donation and/or scientific research.
• Permission or refusal for an autopsy.
• Permission or refusal of dialysis.
• Any other requests or information the loved one wants to communicate to their chosen healthcare proxy.

People falsely assume that having an advance directive is an automatic declaration that they do not want or expect life-saving treatment. We need only look at the name to debunk that “I’m going to die” perception. A living will is a key instrument for the living person to ensure that their wishes are clearly understood and carried out. It certainly doesn’t imply that death is the only situation when the document is enforced.

Completing an Advance Directive

You may engage an eldercare lawyer to draft a living will and/or a healthcare power of attorney on your behalf. You can also use free or low cost online resources to do it yourself.

Forms and services are available at:

• AARP – State by state links to download directive forms.
• MedicAlert – Offers electronic storage and medical access to care documents matched to your unique ID.
• MyDirectives – An online service to create and share care plans including a living will.
• Five Wishes.org – Offers a low-cost do-it-yourself directive online or on paper for children and adults.
• State Agencies – Forms and requirements vary from state to state. Consult your state’s Department on Aging, Social Services or Secretary of State sites.

Selecting a Healthcare Proxy 

Photo by Helloquence

Since you may be incapacitated, an advanced directive requires you to select and name a healthcare agent or proxy. This is a person who will act as a surrogate when a medical decision is required. He or she must make decisions based on your preferences, values and beliefs not their own.

The criteria for choosing are:

• Your proxy must be at least 18 years old.
• You may choose to have one primary proxy and an alternate proxy should the first proxy be unavailable.
• Your proxy does not have to be related to you. You may choose a close family member, relative, a trusted friend or anyone you feel can fulfill the responsibility.
• Your proxy must have discussed your specific wishes regarding critical medical treatment with you prior to agreeing to be a proxy.
• Your proxy must consent to being your healthcare agent.
• Your proxy need not live in close proximity to you. However, your directive must include contact information.

A living will does not specify a healthcare agent but a healthcare power of attorney does. The advantage of having a proxy is that it ensures that family and medical personnel will know who represents your wishes best. There is far less uncertainty when a proxy is there to make the decisions you would make for yourself.

Conclusion

You may choose to keep your advance directive private between yourself and your proxy. Or you can tell your family and friends where to find your directive should it ever be needed. You may also choose to discuss healthcare treatment issues with your personal physician confidentially. How you choose to manage your advance directive is ultimately up to you.

Once you have a living will or healthcare proxy completed, consider filing copies with your physician, hospital and lawyer. You may wish to provide copies to select members of your family for safekeeping.

Having a directive eases minds when critical decisions must be discussed and made. The sooner decisions are made can have a meaningful impact on your treatment and speed your recovery. Advance directives can reduce potential conflicts between family members. It can minimize the guilt and stress that a spouse, partner or child may feel. You will have peace of mind knowing that your wishes are known at all times.