End of life. When we, or a loved one, are approaching this difficult time, how do we decide when to take advantage of everything medical science has to offer…and when to focus only on comfort care…or somewhere in between? In what ways can the doctor help, given that his or her years of medical training generally focused on doing everything possible? Just when is that point in time when we need to make the shift to letting go? These are all impossible issues that I am involved with every day. They involve medical knowledge, compassion, dealing with feelings of guilt and loss, and a whole basket of family dynamics. Decisions needing to be made might include legal matters, financial concerns, and choices about a multitude of medical procedures and interventions. These simmer in an extremely complex and murky soup of emotions and family relationship history. It’s hard enough for one person to handle alone, but families may struggle over these issues and disagree over issues including love, attention, past relationships, guilt, and of course…money. The goal is that in the end, everybody can feel comfortable with the choices that are made. Let’s tip toe through this topic…with great care.
In a perfect world, at such a critical time, the focus should be on the patient. In this perfect world, many of these complex issues have already been resolved. In reality, most sensitive decisions get made at “crunch” time, between the family and the physician. Advance directives and end-of-life decisions are typically made when a loved one becomes critically ill. The plethora of mixed emotions must be put in the background so that there can be a discussion of the more pressing issues: what and how much is to be done medically now, and at the next decision point.
Let’s enter that room with family and the physician. When the patient can make decisions on their own behalf, or has already made their wishes clear, the medical decisions are much easier. Otherwise, everyone needs to be fully brought up to speed on the patient’s condition and prognosis. As you might expect, this is a very emotional experience, and the need for family to support one another is never greater. In the event that a family cannot reach a consensus, the physician will clearly explain what will happen by default. The family then meets again whenever there is more information from additional tests, consultations, involvement of the hospital ethics committee, etc.
Until very recently, end-of-life decisions were pretty much limited to choosing for or against cardiopulmonary resuscitation. Now, the range of decisions that are considered legally and ethically appropriate and desirable includes a much broader choice. These include do-not-hospitalize orders; whether to and how to provide nutrition or hydration; whether or not to initiate future interventions aimed at cure (such as antibiotics); discontinuing potentially life-sustaining treatments, including feeding tubes and intravenous fluids, mechanical ventilation, or renal dialysis; providing sufficient pain medication, even if it were to possibly shorten life; and possibly even the controversial issue of terminal sedation.
It is important to navigate between two main goals: maximal diagnostic and therapeutic care primarily aimed at maintaining life, and maximal supportive care primarily aimed at comfort and dignity. While each goal may be appropriate at certain times, near the end of life, these two goals are often mutually exclusive. In times of family disagreement or an unclear prognosis, or even when death is inevitable but the family has trouble accepting it, there may be an option to set a period of time for full medical support, and if the patient fails to improve, to move on to supportive care. Even if a recovery is possible with full medical support, the family will want to evaluate just what the best possible quality of life would then be for their loved one.
It is so clear that the simplest, but not always the easiest, time to talk with loved ones about our own end-of-life care is before a serious illness or loss of competence. By discussing our thoughts, desires and values ahead of time, and even putting it clearly in writing, our loved ones can follow them closely when the time comes. This could take place at a small family gathering, or you might inform family that you have a living will or advance directive. Provide your doctor with a copy. If you have aging parents or a spouse who have not expressed their desires, introduce the subject. Explain to them that by discussing values and decisions ahead of time, it will help to avoid confusion or conflict. In the absence of decisions and preferences, the default action is to do everything possible to preserve life.
Increasingly, medical and lay communities have called for patients to establish advance directives to inform others of the type of care you would want for yourself if you were seriously ill or dying. It can include a living will, which records your end-of-life wishes in the case that you are no longer able to speak for yourself, designation of a proxy with durable power-of-attorney, which allows someone else to make care decisions for you if you are unable, and a medical directive established with a physician. Note that these documents focus only on health care, and do not address financial and estate issues. Unfortunately, as few as 20% of patients who lack decision-making capacity have advance directives in place. As a result, doctors frequently make critical medical decisions with close relatives, but without direct input from the patient.
An attorney can prepare these documents, or you can do it yourself. Forms are easily found on the web. As time passes, you can change your mind.
Even with written documents, implementing these decisions for others is tough at best. Substituted judgment is making every effort to choose what the ill patient would have wanted. Best interest refers to deciding what is best for the patient. I have seen that the best decisions combine these two methods. Consider the following:
- Has the dying person ever talked about what he or she would want at the end of life?
- Has he or she expressed an opinion about how someone else was being treated?
- What were his or her values in life? What gave meaning to their life?
Most family members are not trained to discuss these topics, let alone to make such decisions. The conversation is emotional and fraught with pitfalls. Nonetheless, discussing this early empowers each of us, and enables decisions to be made that reflect our own wishes and desires. I urge all of you to begin this discussion, and in the meantime, to live your life and to enjoy every day.
Dr. Alan Frischer is former chief of staff and former chief of medicine at Downey Regional Medical Center. Write to him in care of this newspaper at 8301 E. Florence Ave., Suite 100, Downey, CA 90240.
Published: March 26, 2015 - Volume 13 - Issue 50