If you find yourself with a loved one in hospital who can’t make medical decisions, it can be overwhelming, intimidating and emotionally charged. Decisions are needed and each family member is conflicted: What would I want? What would the patient want? What do I want for the patient? The result can be sharp family disagreements.
Death, the prospect of death or even thinking about death is so loaded with emotion that it can hinder our willingness to prepare. Yet, as with estate planning, there are steps every adult should consider. And as with estate planning, failure to plan cannot only be frustrating and emotionally taxing for your family, but also lead to undue suffering—and large, unnecessary medical bills.
Two key “advance directives” can help. First, a healthcare proxy, also known as a durable power of attorney for healthcare, appoints someone to speak on your behalf when you can’t speak for yourself. Second, a living will lays out what specific types of “heroic” treatment you want in the event you’re terminally ill or injured and can’t express your wishes.
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As a hospital CEO, I spoke with clinicians who had to help families navigate such situations every day. They observed some common problems. For starters, the durable power of attorney for healthcare is sometimes confused with a financial power of attorney. Despite similar names, they’re completely different documents. The first can make your wishes known during illness. The second can act for you in financial matters—but not with medical issues.
The clinicians also pointed out a second problem they see: More living wills are completed than powers of attorney. A living will details the patient’s medical wishes. But without a corresponding healthcare power of attorney, no one is designated to see those wishes carried out.
Lacking these two advance directives, many families find themselves needing to make healthcare decisions without guidance on how to act. This could be due to a patient who is unconscious from an accident, or a slow decline in mental acuity that renders the patient no longer able to give consent. If the patient doesn’t have the mental competence to give consent for treatment, he or she also can no longer sign a document turning over that decision to someone else.
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Medical professionals are taught to diagnose a problem and solve it. Their bias will be to act and, in fact, the law requires it. We now live in an age where technology has the tremendous ability to cure, but also the unfortunate ability to prolong suffering, even when no cure is in sight. The doctors can employ the technology. The patient, or their proxy, has to say when it’s time for nature to take its course.
Selecting someone to act in your place—your proxy—shouldn’t be taken lightly. A spouse is an obvious choice, assuming he or she is capable of fulfilling the role, which may include making difficult decisions. If not the spouse, it could be an adult child. Maybe it’s a trusted friend. Seniors with no family must take extra care to find someone who will make sure their wishes are followed.
There should be two main considerations. First, can the person selected accept and understand my wishes? Second, will my proxy carry out my wishes at the most difficult of times? Note that the person you select doesn’t have to agree with your wishes or feel that he or she would make the same choices. You should consider appointing at least one backup proxy in case the primary proxy can’t fulfill the role.
With your proxy designated, communicating your wishes through a living will is next. The most important thing to understand about a living will is that it isn’t “one size fits all.” It’s not an automatic license to “pull the plug.” Rather, it’s your opportunity to lay out your wishes in as much detail as you want. If your wish is for everything to be done to keep you alive, no matter what your condition or the chances of success, then the living will can convey that. Interestingly, a hospital chaplain told me that about 40% of the time resistance to completing a living will came from families, not the patient. Often, this comes from a misunderstanding of the purpose or a distrust of “the system.”
There can be misunderstandings based on cultural or religious grounds. A living will doesn’t promote or allow euthanasia. It only allows you to say what you want. If in doubt about the religious implications, you can consult a cleric.
Once completed, both documents should be scanned into your electronic record at your physician’s office and into the hospital electronic record during your next admission. If you have special family or medical considerations, you should consider a supplemental conversation with your family doctor about your concerns. This is a situation where more is better. Make lots of copies and be prepared to hand a copy to each new healthcare provider. Ideally, a transfer from one facility to another will include the paperwork. Don’t depend on it, though—provide your own copy.
Your proxy should also have copies of your advance directives and should have an understanding of your expectations. My wife and I carry a card in our wallets stating that we have advance directives and the phone numbers of our proxies. Consider carrying copies when you travel, especially if you’re a snowbird who lives in another state for weeks at a time.
The bigger the family, the more likely that fear, guilt, hard feelings or tender feelings will splinter the group. The proxy’s job will be easier if you communicate to your family that you have a living will, what it states and that you expect it to be followed. This can head off family disagreements if your proxy has to act on your behalf.
What if your family member didn’t have the foresight to prepare advance directives? State law designates who clinicians must approach as a surrogate, typically starting with a spouse or adult children. If multiple family members are weighing in with conflicting opinions, there are resources available in every hospital to navigate this situation. Start with the immediate team of doctors and nurses. They can give the best picture of the patient’s condition and likely prognosis. Supporting them and the family are social workers and hospital chaplains, who are trained to guide families through decision making.
The living will and durable power of attorney for healthcare are documents governed by state law. You can undertake to create them yourself by accessing the correct forms for your state through AARP. Hospitals and doctors’ offices may also stock the forms. Observe the requirements for witnessing each document. For example, family members may not be allowed to witness or your state may require a notary. If you want, an attorney can draw up the documents. The attorney can also keep a copy as the ultimate backup.
As your health or feelings about medical decisions change, each of these documents can be revoked or replaced with an updated version. Old copies should be retrieved and destroyed. Make sure to track down any electronic copies.
This column originally appeared on Humble Dollar. It was republished with permission.
Howard Rohleder, a former chief executive of a community hospital, retired early after more than 30 years in hospital administration. Check out his previous articles.