Difficult Issues at End of Life; Embracing Uncertainty; UVM/PMC Palliative Care Doctor,Diana Barnard’s response to Barbara Clearbridge’s September 4th post; Ask Your Loved Ones Now
In a recent Ways of Seeing article, Barbara “Shulamith” Clearbridge described the difficult issues she and her family faced as her dad was seriously ill and on a breathing machine. She poignantly described the emotional challenges of wanting to honor her father’s wishes while feeling as if she was holding life and death in her hands.
Many common Palliative Care themes come to mind. As we explore some, it is important to keep in mind that this is not about a right way or wrong way - every person, every family, makes different choices based on personal values. What is vital - that choices are well informed and patient centered.
TRADEOFFS SHOULD BE RECOGNIZED
Many patients say, “Do everything you can to keep me alive”. In all honesty, most of the people I care for want to live as long as they can. However, most people have other priorities as well, including HOW they want to live. When considering treatments we might want, it’s important to understand that modern medicine often allows us to prolong life with technology. This technology comes with tradeoffs. Someone may be able to survive a medical event, but gain new care needs that have a huge impact on where and how they live. For example - being able to live on a machine may mean needing to live in a certain type of care setting. When exploring treatment options, we often focus on the positive aspects of a possible intervention without a exploring the negative side. Considering tradeoffs is essential to honest decision making. When we talk about our wishes for care, we must be open to talking about what makes our life worth living, and what circumstances might arise in which living as long as possible is no longer the primary goal.
LIFE IS TERMINAL
Yes, it’s important to keep this in mind. Even with advances in modern medicine, we will all die. This might seem obvious, but often gets lost in the midst of a serious health crisis. Sometimes the conversation is about how we want to live. Sometimes it is more about how we want to die. It can be emotionally challenging, yet vital to keep both of these priorities in mind.
Many times patients and families feel as if they are holding decisions of life and death in their hands. It can be totally overwhelming. The truth is more subtle than that. Often times it is not about “deciding” to let someone die, but rather “accepting” that someone is dying. There comes a time in advanced medical care when we recognize that someone is in the “final phase of life”. Dying can take minutes. Dying can also unfold over hours, days, weeks, or months. Developing treatment plans at end of life should be a team effort involving the input of both trusted medical providers who are experts in the medical facts and loved ones who are experts in the patient’s values and priorities. The Decisions that are made are ideally a thoughtful group effort.
ADVANCE CARE PLANNING (ACP) IS A PROCESS
It is not possible to fill out one form and have all your important end of life decisions set in stone. Step one of ACP is to name your Health Care Agent; a person who can “speak on your behalf”. Your agent does not DECIDE for you but helps SUPPORT decisions based on YOUR values. Other ACP forms document your wishes for organ donation, after death body care, and life celebration. You may also choose to state “treatment preferences” about certain interventions you might want or not want if you become seriously ill. It’s very important for the health care team to know about your wishes. It’s also critical for you to understand that we can hardly ever predict exactly what circumstances might arise when we are seriously ill. There is often more nuance and uncertainty in clinical situations than we are prepared for. Excellent communication at the time of an illness is needed for “in the moment” decision-making that honors patient values and treatment preferences in balance with the medical reality at hand.
STARTING + STOPPING LIFE SUPPORT
Health care professionals are often comfortable with a “therapeutic trail” of life support. This means is someone is critically ill and we are not sure if they are going to live or die, we can start life support in hopes it will be temporary, and then stop it and allow a natural death if the person is not able to recover. In my experience, these trails are much more gut wrenching for families than we can ever imagine. In many situations, starting and stopping life support can be more traumatic than not starting life support at all. When I am working with patients facing terminal illness, we often discuss how they feel about life support. Calm and thoughtful discussions when things are stable are much easier that emotionally charged discussions in an emergency. In these moments we may discuss how in advanced illness, trying CPR or going on a respirator may sustain life for a short time, but that recovery to a previous level of functioning may be very unlikely. We discuss such things as tradeoffs, how one wants to life, how one wants to die, and the burden of decision making on family.