We continue with the second part in our series on end of life care with another guest post from…
Sebastian Sepulveda, MD, author of At Death’s Door: End of Life Stories from the Bedside
Understanding What’s to Come: Open and Honest Conversations
I am a firm believer in frank conversations with patients. They need to have all of the information; they have the right to understand their situation with as much clarity as possible. More often than not, one of the primary reasons why there is so much pain and suffering, as well as unnecessary procedures performed at the end of life, is due to the fact that people do not really understand what’s happening to them, and thus they cannot see how detrimental treatments are for them at that point.
In the interest of having an open and frank discussion, one of the most critical conversations a terminal patient needs to have with their physician as well as with medical support staff regards resuscitation efforts. I do recommend the DNR option, especially if the condition is deemed terminal and there is no hope of recovery from the primary disease, let alone the severe complications which can arise as a result of a cardiac arrest. First and foremost, there is the excruciating pain involved in extending a life beyond the point where it should be, then of course there is the astronomical cost for the patient and their family.
Directly connected with a DNR is the DNI. For the majority of patients with a terminal disease, intubation could possibly be a “reasonable option”; however, given the quality of life, given what they will actually experience when they “come back,” and the fact that it will most likely all just happen again effectively prolonging the nightmare for the patient and family, having a DNI could be the most humane and reasonable option, depending of course on the individual case. This is where, again, knowing the patient and their circumstances is important, and why support staff and medical personnel who have been working with the family and patient play such a vital role.
You also want to discuss the idea of narcotics. At this particular juncture, there are no limitations to the narcotics that can be used. Often such are prescribed quite liberally to help patients cope with the unending pain. This also goes for psychoactive drugs. Depression and anxiety are very much realities for end of life patients. Treating them for depression simply makes sense.
Calling for That Second Opinion
Hope, as I have discussed, is emphatically a part of the human condition. We all hold out hope, often to the very end. Our families pray that the situation will suddenly change. Patients, in desperation, scramble for another outcome. I have seen people move to a different state looking for a second opinion about what they believe is an erroneous assessment from their primary team. I have also seen, in the same breath, people reverse their hospice protocol, such that was carefully devised so as to come up with a thorough and complete assessment of their individual situation, and a corresponding palliative treatment plan to assure the utmost comfort. From this, they suddenly shift to the attitude that they want the most aggressive interventions in order to prolong their life.
Family is also a huge factor as far as pushing for that which unfortunately is most often unrealistic. I have seen situations where children have reversed all of the plans and again traveled to a different institution, requesting the case be reopened and their parent’s assessment begin again at square one, only to end up with the very same diagnosis and prognosis.
As a medical team, we need to assure the patient and their family that we are looking and have looked at the situation from every conceivable angle. We need to let them know, regardless of how many times it takes, that these types of cases are never taken lightly. Painstaking stretches of time go into evaluating and prescribing on behalf of the primary team. Our job after all is to save lives, but when we can’t, our job is to compassionately monitor those lives and create as pain free an experience as possible.
Families as I have witnessed, beyond just seeking that second opinion, frequently try and fight the DNR designation. The patient, after an open and honest discussion with his/her doctor, has made the decision to end their life in a peaceful manner, not forcibly being resuscitated when there really is no chance of survival left. This is their wish, their choice. But then they go into cardiac arrest or some other form of coding, and the family understandably moves into a state of shock—they are panicked. Instinct tells them to reverse the DNR and the patient’s wishes evaporate in light of this onset of fear. The patient is then put through a great deal of stress and misery that they never wanted to experience in the first place—as per their order. Those patients are sometimes treated for weeks in a comatose state only to have their physical and mental condition gradually worsen. Here is where, in some respects, our job branches into that of counselor. The patient understood the ramifications of resuscitation, now it is the family who needs to be reassured that this is the right decision, that honoring their loved one’s wishes is the most prudent and compassionate course. When it comes to end-of-life matters, the medical team’s job truly is multi-faceted.