Don’t Overlook Advanced Directives

You would think by this time that everyone would know how important it is to have an advanced directive. And in fact, according to research done by the folks at The Conversation Project, 90% of people say it’s important to talk to their loved ones about end-of-life care. But only 27% have done so. And, 82% of people say it’s important to put their health care wishes in writing. Yet only 23% of people have actually done that. The low percentage of people who have done an advance directive includes younger adults who think they have a long time before they need to worry about that sort of thing. But, if we just take a look at the percentage for severely ill or terminal patients, still less than 50% have an advanced directive in their medical record, according to the U.S. Agency for Healthcare Research and Quality. Even some hospice patients—12%, according to the National Hospice and Palliative Care Organization—haven’t written down their wishes.

The Conversation Project website also states that 80% of people say that they would want to talk to their doctor about end-of-life care decisions, if they were seriously ill. But only 7% report having had that conversation with their doctor. Most of the time advanced directives don’t get into a patient’s medical record. Or, if it is there “…it is not very visible and is not likely to get consulted when decisions need to be made,” says Charles Sabatino, Director of the Commission on Law and Aging at the American Bar Association.

Knowing these statistics it’s important for doulas to ask patients if they have an advance directive, and help them if they don’t. There are many different choices patients need to think about at end of life. One of the big ones is where they want to die. If they want to be at home, the doula should still have the person consider under what circumstances he or she might want to go, or at least accept going, into an inpatient unit or the hospital.

In some cases there are cultural reasons for going to a facility for the last days of life. There also may be the potential for caregiver breakdown or symptom management issues that suggest a facility would be best at the end. Even the impact on children in the home may dictate this choice. Whatever the factors playing into this decision, it needs to be thoroughly discussed in the family and ideally written down.

Naturally another important part of an advance directive is how aggressively a person wants symptoms to be medicated. This decision may require some discussion with the medical team to fully understand the pros and cons of particular medications on the person’s consciousness, as well as on his or her quality of life. Most times dying people don’t get information on choices about medications, or what they are told is very superficial. This denies them their full rights to decide for themselves. After having all the information, the discussion should be broadened to include family. Everyone’s feelings need to be heard and, if necessary, worked through to achieve a well-articulated directive that can be followed. A doula may be very helpful in facilitating this kind of conversation between the dying person and the family.

One issue that can be hard for family to deal with is food. In many families the association between taking good care of a person and making sure they eat is very powerful. So, a dying person needs to make sure there is agreement on how the family will respond when the time comes that they no longer want to eat. An advance directive must also be clear about the placement of a feeding tube or artificial hydration. Both of these interventions can cause increased suffering for the dying person. But, for some people a religious imperative may take precedence over personal discomfort.

In states where a person can choose medically aided dying, this needs to be carefully approached with an understanding of what is entailed in that decision. That means not only knowing the regulations that need to be followed, but also understanding the procedure and how that will be experienced. Family has to be part of this decision and agree to honor the person’s wishes, even if that is very difficult. In states where that choice doesn’t exist, a dying person can still stop eating or drinking to take control of his or her dying process. How everyone involved will experience this needs to be well understood and agreed upon. Here again the doula may have a role in facilitating what can be a very difficult discussion.

The above issues are certainly the most important to be included in an advance directive. However, there are other issues that might be considered as well, such as the use of a hospital bed, placement of a Foley catheter, the use of a forced-air breathing device—if the illness might result in that recommendation at some point—and so on.

The last important choice for a dying person to make as part of their advance directives is the selection of a proxy—the person who will make decisions for him or her, if and when the person can’t make those decisions for themselves. This may be the most important part of an advance directive. The proxy may end up making critical decisions that affect the course and comfort of the dying process.

Too often the choice for a proxy is made without careful thought. Most often the person picked is a close family member. But that person may not be able to follow their loved one’s wishes, if it is too emotionally difficult to do so, or because it conflicts with very firmly held beliefs. So, probably the most important quality in a proxy is the ability to strongly advocate, even aggressively, for the dying person. They may need to put aside their own thoughts and feelings about a particular choice, in order to fulfill this role. The proxy may also have to stand up to the medical team, if they want to go against the dying person’s wishes.

Family dynamics can be difficult and complicated. It is important for the proxy to be trusted by extended family and friends. He or she should also have the ability to deal with difficult emotional responses to decisions. It is helpful if the proxy lives close to the dying person, so they are more available.

The dying person should also select a backup proxy, in case the primary proxy can’t be reached. Both proxies should take the time to thoroughly understand the dying person’s wishes and the particulars of their illness and situation, so they can make informed decisions. It helps if they also have the right to request a second medical opinion, if that seems advisable.

Of course, the dying person should not only discuss their wishes with the proxy, but also give them the opportunity to ask all the questions they might have. A doula may be quite helpful as an outside, neutral person to see that these discussions with proxies address all of the potential issues. And naturally, both proxies need to be willing to take on this role.

Thus, a doula can play a very important and active role in considering advanced directives. As in other aspects of preparing for the last days of life, and planning how it should unfold, a doula can make the process easier for everyone. They can also make sure that advanced directives aren’t overlooked, which can lead to painful consequences for the dying person, unnecessary emotional turmoil during a vigil, or deep regrets in the grieving process.