Ensuring the Medical Care You Want and Need

Last update on: Oct 24 2019

Your estate plan should be about a lot more than finances. Now that the federal estate tax doesn’t affect many estates, more people shift their primary focus away from taxes and even away from finances in their planning. But most people still aren’t paying enough attention to the other issues.

An estate plan isn’t complete without the medical care documents. In fact, in the past I’ve recommended that you make these a priority. Have the medical care documents finalized while you’re still considering the other issues in the estate plan and even if you don’t want the rest of an estate plan.

The medical care documents in estate plans evolved rapidly over the last few decades. There are several documents to consider.

HIPAA Authorization. This simple document didn’t exist and wasn’t even contemplated when I was in law school and for years afterward. There was a time when you could visit someone in a hospital, say you were a friend or family member, and learn about the patient’s situation. But patient privacy was enhanced under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and changed that.

Under HIPAA, providers can release any information about you only to people you specifically authorized to receive it. Each medical care provider can interpret the law differently. It is not unusual to find providers who won’t give details without a written HIPAA authorization even to close family members who have appropriate identification.

Fortunately, the HIPAA authorization is straightforward and can be incorporated into your other medical care documents, as we’ll discuss.

Living wills and advance directives. Not long ago, living wills were novel and controversial. Over the years, living wills became so widely accepted that most states enacted legislation authorizing them and approved sample forms. But we’ll see that living wills often aren’t strong enough planning tools by themselves.

A living will in its basic form states whether or not you want certain levels or types of care in certain circumstances. The basic, traditional living will states, “If I have a terminal condition, and there is no hope of recovery, I do not want my life prolonged by artificial means.”

In real life, a living will often isn’t very effective, because a person’s health situation rarely is clear cut. Often, it can’t be said with certainty that someone has no hope of improvement or is terminally ill. There also is debate over whether some types of care, including feeding and hydration tubes, are artificial life support or are a means of providing comfort. They also can be a means to help someone recover from a condition that otherwise would be a final illness.

The response of some estate planners is to draw up detailed, custom living wills. Those planners can work with their clients to go through questionnaires that sometimes total 60 pages or more. The questionnaires give different scenarios. The client decides the decision to be made in each circumstance. You might have seen an example on the television show Seinfeld. Eventually, many estate planners began calling these documents advance directives instead of living wills.

Even this approach has drawbacks. Technology and medical knowledge change. A situation that was terminal five years ago might be treatable today. Also, we don’t really know what a person is feeling or experiencing in all circumstances, so it is hard for others to apply the directives. Of course, even a questionnaire of 60 pages or more cannot cover every possible scenario. Finally, there still can be disagreements over the facts and certainty of the prognosis.

Another caution about living wills is some studies found they aren’t always effective. Doctors and nurses might not see the documents until after treatment has been administered. Some studies argued that care providers would ignore the documents because they feared lawsuits. At other times, doctors interpret the documents as calling for approving treatment when other doctors or family members had a different interpretation. Finally, if one or more key family members ask for treatment, doctors normally comply even if the document says otherwise.

Often unsaid is that the original intent of living wills was to stop or remove care. You, on other hand, might prefer to receive care in all but a few circumstances.

Health care power of attorney. The main problem with a living will or advance directive is that you are trying today to determine the treatment you do or don’t want in the future. There are too many possible scenarios for you to imagine them all and give clear guidance. You’re also asking the medical providers to interpret the document to determine what you would want if you were able to make a decision.

Because of these and other limits, a health care proxy or agent should be appointed instead of or in addition to having a living will or advance directive. The name of the document in which you make the appointment varies among the states, but it generally is referred to as a health care power of attorney (HPOA) or proxy.

An HPOA gives one or more people the authority to make medical decisions when you are unable to do so. Those given authority through a HPOA talk with the medical providers to understand your situation and the options. That process provides real information, instead of the theoretical scenarios you deal with when developing a living will or advance directive.

Ideally, of course, the agents know you fairly well and have a good idea of the course of treatment you would want. The persons with the power of attorney need to be available to the care providers, so you might not want to name someone who lives a sizeable distance from you, travels a lot, or doesn’t have some flexibility. I think you ease the burden on others by naming more than one person. Some people appoint only family members. Others believe that the decision can be less emotional if at least one trusted non-family member is named. When more than one person is named, you need to have voting rules. Do you want a unanimous decision or a majority? You also need a default rule. For example, you can say the default is to provide treatment recommended by the lead medical provider unless all the agents agree to withhold it or choose a different treatment.

The HPOA can be supplemented with a living will, advance directive, or other document that expresses your philosophy and wishes under at least some circumstances. In addition, whichever documents you use can include non-medical instructions. You can give instructions regarding music, grooming, fresh flowers and other aspects of your environment you’d like when you are receiving care.

Do not resuscitate/hospitalize. It’s common for older patients, especially frail ones in nursing homes, to have do not resuscitate (DNR) and do not hospitalize (DNH) orders. Research indicates CPR rarely helps these individuals recover and instead makes their deaths violent rather than peaceful. The idea behind the DNH is that at some point people do not benefit from hospitalization for every new ailment or development. Instead, they should be kept comfortable wherever they are residing until they pass. People who agree with those thoughts and believe they are in those situations can use the documents to decline CPR or hospitalization in advance.

Making Your Instructions More Effective

Remember that one of the criticisms of living wills is that they often aren’t followed for various reasons. Consider these steps to ensure your preferences are known and followed.

• Put it all in one document. You don’t need a separate HPOA and living will or advance directive plus a HPAA authorization. Most estate planners now prepare one comprehensive document, and many states now have model forms available that combine the documents. Several websites also offer either the state-approved forms or their own recommended forms. Approved forms for each state are offered at www.caringinfo.org. You also can find sample documents, labeled Five Wishes, from Aging with Dignity (www. agingwithdignity.org; 888-5-WISHES). Some web sites offer free documents while others charges modest fees.

• Be sure it is valid. The documents have to be valid in the state where you are present at the time treatment is considered. Some states require two witnesses for the documents to be valid. Others require three witnesses. A few states require notarization. If you spend time in more than one state or travel a lot, your documents need to be valid in all states involved, or you need separate ones for each state. A good estate planning attorney can help determine the best solution for your case.

• Don’t keep it to yourself. To reduce disagreements and misunderstandings among those around you, it makes a lot of sense to discuss details with the people you designate as proxies. Share general beliefs and plans with your family and loved ones. Your proxies need to know your preferences so they can make decisions in specific circumstances that reflect your wishes. Each of them also should have a copy of the document.

• Of course, the medical providers need to know about your plans and wishes. Your regular physicians should have copies or a notation in your records that the documents exist with contact information for any proxies or agents. Many states now have online registries. You register the documents and medical providers easily can search and find them.

Even with these tools, difficult decisions might have to be made by loved ones. But you can ease the burden and provide a framework for action by including medical decision making in your estate plan.

Though I list sources of forms and documents, I don’t recommend that most people complete these on their own. This is part of an estate plan and should be finalized with the guidance of your estate planner.

Keep in mind that most states allow a doctor or hospital to refuse to follow the instructions for reasons of conscience. So, you should discuss preferences and philosophy with your key medical providers.

Most of us need help in thinking about the difficult treatment decisions, whether for ourselves or others. A useful guide is a booklet written by a former nursing home chaplain that discusses the pros and cons of different choices, including summaries of the scientific research. You probably could benefit from Hard Choices for Loving People, by Hank Dunn (Quality of Life Publishing, 877-513-0099 or www.hardchoices.com; $7).

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