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Giving Directions

Howard Rohleder

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 can not 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 health care proxy, also known as a durable power of attorney for health care, 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.

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 health care 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 health care 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 health care 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.

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.

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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 health care 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 health care 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.

Howard Rohleder, a former chief executive of a community hospital, retired early after more than 30 years in hospital administration. In retirement, he enjoys serving on several nonprofit boards, exploring walking paths with his wife Susan, and visiting their six grandchildren. A little-known fact: In May 1994, Howard was featured—along with five others—on the cover of Kiplinger’s Personal Finance for an article titled “Secrets of My Investment Success.” Check out his previous articles.

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Andrew Forsythe
Andrew Forsythe
6 days ago

Howard, I very much appreciate your contributions to this forum. Medical and financial issues intertwine so often, and your background and experience make for some especially helpful insights and guidance.

mytimetotravel
mytimetotravel
6 days ago

I have all the paperwork, including a DNR (which I carry with me) plus a healthcare POA very able to say “no” and keep saying it. My concern, and it is a big one, is that medical practitioners will not honor my wishes. I recently had eye surgery, and was told by the anesthesia nurse that “different rules” applied in the OR – I couldn’t count on my desire not to be revived being honored! I have also read far too many stories of situations where patients’ wishes were not honored despite family members and POAs trying to insist. Fortunately, the hospitals in my area are not run by Catholic organizations, but I understand that in some parts of the country there is no other choice, and patients’ wishes may well be disregarded.

Howard Rohleder
Howard Rohleder
6 days ago
Reply to  mytimetotravel

Yes, the rules are different when you go into the OR. As it has been explained to me, the anesthesia team is putting you under and has an obligation to bring you back. The approach is to “suspend” the DNR while in the OR. Presumably if you are choosing to have surgery despite being DNR, you have a correctable condition that you want repaired. If you code in the OR, you will be resuscitated which leaves the decision whether to continue life sustaining treatment for later. This must be a consideration when deciding whether or not to have surgery if you have elected to otherwise be DNR.
I, too, have heard of situations where a DNR is not honored. You should escalate the request by, depending on the source of the refusal: 1) asking to discuss it with the nursing supervisor, 2) enlisting the help of the Social Service staff, and/or 3) asking that care be transferred to a different attending physician. I’d like to believe that in 2022 one of those options will solve the problem. If not, and I hate to offer this option, an attorney may need to be consulted.

mytimetotravel
mytimetotravel
6 days ago

That is extremely unfortunate. It is very difficult these days to achieve what I would call a “good death”, and dying on the operating table would certainly count. I am in my 70s and would much prefer not to be resuscitated in such a case, especially as I understand that the patient’s condition after such activity may be less than optimal. The surgery in question was a partial cornea transplant, with a highly desirable outcome, but I should not have been hostage to the desires of the anesthesiologists.

Last edited 6 days ago by mytimetotravel
Deborah Gray
Deborah Gray
6 days ago

I think it’s not “advanced” but “advance” directives, i.e., directives in advance.

Howard Rohleder
Howard Rohleder
6 days ago
Reply to  Deborah Gray

I apologize for the typo: my fingers move faster than my brain! Thanks to Jonathan for correcting.

Jonathan Clements
Admin
Jonathan Clements
6 days ago
Reply to  Deborah Gray

Good catch — thanks. I made that fix.

Rick Connor
Rick Connor
6 days ago

Thanks for the excellent article Howard. Having these documents at the ready, and understood by the family, make difficult discussions much easier. Discussing your wishes with your proxy well ahead of time takes away the much of the angst at the time of crisis. If you have a large family, making your wishes known to all well in advance can help prevent some of the difficult family discussions you reference.

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