I was at the end of a long week working in an unfamiliar hospital when the ER called me to admit a 92 year-old anemic woman. I took down the information and then immediately asked if she had an end of life plan. The ER doctor became very flustered. She told me the patient was not at end of life. She insisted this was only a reversible anemia and the woman needed to come in for treatment. I tried to explain to the ER doctor how I see every 90+ year-old at end of life, no matter what their acute problems, since my goal in the very elderly is to maximize their quality of life. The ER doctor became angry and defensive and said the patient and her daughter were not ready for that kind of conversation. I wanted to counter back how they should be since it couldn’t be a surprise the patient would not live forever, but the ER doctor had become so upset I knew the argument was pointless. So I dropped it, thanked her for the information and hung up the phone. I was so disappointed one of my colleagues would get upset about addressing end of life with a 92 year-old it was a good ten minutes before I could get back to work. Even then I spent another fifteen minutes venting to the first sympathetic ear I found. Luckily it belonged to a very understanding co-hospitalist who nodded knowingly as I lamented a medical culture that refuses to address death. She agreed that talking about death with patients was still somewhat taboo where we were working. But the sad thing is, it seems to still be taboo everywhere.

For many years I’ve been frustrated by how inadequately elderly people and their families are prepared for death. As a hospitalist many of my patients are nearing their life’s natural end. Instead of being able to spend the end of their lives comfortable in their own home surrounded by loved ones, I see too many bounce in and out of hospitals and rehabs until they die in these unfamiliar clinical settings filled with strangers. Because they are ill-prepared it comes down to me to talk to them about their end of life wishes, a doctor they’d just met in the hospital when they are at their sickest. Sometimes patients are able to tell me they want to go home and just be kept comfortable but many times they are too sick to make their own decisions. Then family becomes responsible for these decisions which puts people in the terrible position of deciding how they want their loved ones to die. And even if a patient has a living will the family could still be in limbo since the language of the living will often does not adequately guide the decision making process in end of life cases.

How could this be? The whole point of having a living will is to ensure a patient’s wishes are met when they are too sick to express them themselves. But here is the real problem-neither patients, their families, nor the legal entities creating these living wills has a good grasp on what end of life is. To be honest, it’s taken years of practicing medicine for me to really understand it. Living wills are written to best address when the patient will be at a point in their disease process that would require advanced medical intervention, such as ventilators and other resuscitative measures, to sustain life. Sometimes living wills will be more expansive to include decisions about less aggressive measures-such as using antibiotics or artificial nutrition-but the language here is usually very ambiguous and open to interpretation. What I’ve come to understand is most end of life experiences cannot be so neatly applied to the directives of a living will.

First of all, I want to define what I mean as end of life. End of life is a time period when the patient will no longer get better overall, instead they will continue to worsen until death. For patients with dementia end of life could be a period of years, for a patient with metastatic cancer it could be a period of weeks. During this time most patients will require multiple hospitalizations to treat the consequences of their underlying illness-for example aspiration pneumonia in demented patients or line infections in patients receiving chemo.

If a living will exists it will answer the question of whether the patient wants to be artificially resuscitated and sustained on machines should they stop breathing or their heart stops. It usually will not sufficiently answer whether artificial hydration and nutrition should be used at end of life. As stated above, the wording in living wills is particularly nebulous about this leaving families with the harrowing decision to continue or stop IV fluids when their loved one can no longer speak. This is the most difficult decision for families since they feel if they stop IV fluids they will be killing their loved one even though evidence shows at end of life patients have less pain and live longer without them.

Other issues the living will does not address are the many things patients endure in hospital settings-from IV’s to multiple blood draws to sleep disturbance to lack of interaction with loved ones. These things make the time the patient has left not enjoyable. The living will does not let healthcare providers know when a patient would want to stop such conventional medical practices or how far a provider should go in treating the different consequences of their illness. Most importantly it does not include the exact circumstances when a patient would want no more medical interventions and just be kept comfortable-such as when to stop all vital signs and nursing checks.

Just determining whether a patient wants to be resuscitated and their life sustained with artificial hydration and nutrition is not enough to protect a patient at end of life. Living wills should be carefully drawn up to try to include all the nuances of the end of life process so nothing will be left to burden grieving loved ones. They should include how much time a patient would be willing to spend in hospital and/or rehab settings, and how early in their disease process they would want their care transferred to a comfort care/hospice setting. I recognize each patient’s case is unique and all contingencies at end of life cannot be predicted, but I think we can start to do a better job with living wills than what we have now. It starts with primary care doctors having very direct and honest discussions with patients and families about their disease process, or their advanced age, and what lies ahead of them as they continue to worsen. That way patients can make their most educated decision about how they want to live at the end of their life and try to ensure their wishes are carried out.

In the case of my 92 year-old, whose anemia was likely to recur causing repeat hospitalizations in the time she had left, a living will that clearly described how she wanted to be treated for this anemia-i.e. to stop hospitalizations once she was showing overall functional decline so she could be kept comfortable at home- would allow her to control what would happen at end of life and give her daughter great peace of mind when she became too weak to advocate for herself. Hopefully one day such specific living wills, written in unambiguous language that directly applies to medical practices, will be readily available for primary care doctors to procure for all their patients nearing end of life.