The Limits of Hope: Redefining End of Life Care

"Aim at heaven, and you will get earth thrown in; aim at earth, and you will get neither" (Lewis).

“Remove vexation from your heart, and put away pain from your body, for youth and the dawn of life are vanity” (Ecclesiastes 11:10).

I’ve been a respiratory therapist in a pediatric ICU for nearly 12 years now. I remember being so excited after graduation and starting my first full time job. I had been equipped by an excellent graduate program with all sorts of knowledge and skill to bring help and healing to my patients. There is a reward like no other witnessing a patient’s health improve from a serious injury or illness and being a part of the medical team caring for them. But I also remember experiencing a sense of shock with the number of lines, tubes, and machines that were attached to a lifeless and sedated body. While a student, I remember leaving the hospital and coming back to the same clinical rotation weeks later and that same patient was still attached to the same lines, tubes, and various life support I had seen earlier. Was this the way that the mechanical ventilator I had been trained to manage was intended to be used? Were humans meant to be kept alive this long with most of their major organ functions taken over by machines? Certainly, I’ve witnessed and taken joy in the many success stories and amazing recoveries of some patients.

Life support technology is a gift, and where certain death once seemed inevitable, life has been preserved. There is so much to be thankful for in this. But there is also a dark side to medicine. Surrounding end of life situations, life support and other therapies can actually increase harm or prolong suffering. As I write this, I fear damaging the hope of someone who is in the hospital or has a loved one undergoing these kinds of treatment. But greater boldness in speaking about our limits is needed now, more than ever, as life support technology increases its prominence in medicine. My goal here is to encourage healthcare workers to provide care in a way that focuses on nourishing a life, not mere prevention of death.

Acknowledging Our Limits

A recent book entitled Being Mortal by Atul Gawande has been helpful for me as a healthcare worker to more clearly understand the problem in our current approach to medicine. Gawande, a surgeon at Brigham and Women’s Hospital in Boston and a professor at Harvard Medical School, has written several bestselling books on the topic of medicine. Gawande recognizes that “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need” (9). There has been a large shift towards a system more purely focused on saving lives within the walls of a hospital when care for the sick, elderly, and dying was mostly carried out by hospitality from family or churches. Hospitals with faith-based names, such as St. Luke’s or Christ Hospital, now often serve as symbols of heritage rather than places of hospitality.

Surely, the capitalist system in America has driven incredible advances in life-saving medicine. But even with the many advances, our bodies waste away. As medical professionals, when faced with the reality of death and the limitations of medicine, and the glimmer of hope we've built our medical system around crumbles, we might struggle to provide what patients truly need in their final moments. Doctor Gawande claims the medical system is “a multi-trillion-dollar edifice for dispensing the medical equivalent to lottery tickets” with little ability and willingness to prepare patients for the likelihood that they won’t win. “Hope is not a plan, but hope is our plan,” adds Gawande (171-172). When patients and families with a similar level of honesty about their own mortality are willing to exhaust all options for even the slightest chance of survival, suffering increases and we begin to compromise the dignity of life. At some point, we will be left to face this reality: not all health issues can be fixed, and no amount of hope can change the outcome.

Persons, Not Just Bodies

So how then do we steward the gift of medicine more wisely? How do we as health care workers begin to promote restraint and wisdom? What influence do we have in helping families make wise decisions?

Those we serve come focused on longevity. They come expecting that we can fix their bodies. And the rapid advances in science and medicine have promoted this fixation. Doctor Gawande shows that while our culture looks to medical professionals as experts and saviors, they, in turn, often succumb to that view and place their focus on the success they are rewarded for: saving lives. But the author is willing to admit, “I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering. This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing” (9).

There is a shift needed in the system we’ve created. This shift requires that we stop doing exactly what patients and families expect us to do. While working to heal and save lives is what we were trained to do, this doesn’t mean that our only service is to their physical life. We obviously can’t control how our patients and families view life or their own mortality. But we can control how we present ourselves in the hospital room. Every health care professional, whether they like it or not, carries some informal authority by their title and an expertise as a licensed medical professional. What we do with that is up to us. We need to start approaching the sick person differently than the status quo.

A step in the right direction is to treat the patient as a whole and not just come with all the answers and endless options to take over their failing body parts. Doctor Gawande says, “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way” (259). Often, when even small enjoyments, comforts, and what matters most to the patient are taken away in the hospital in the name of 'safety,’ we fail to meet the person in front of us. Even in providing the most attentive care to the physical benefit of my patient, I might miss connecting on a personal level entirely.

The kind of bedside manner that connects accomplishes a couple things. One, it treats the patient as a human being - a person who not only has a body that needs healing, but a soul, a personality, a purpose. Second, building a relationship of trust provides the platform from which vital conversations can happen. Helping a patient or family open up about how they view their life and what matters most can facilitate a more balanced path to healing. I suspect many families are ill-equipped to have these conversations, and the bedside clinician is in a unique position to help facilitate them.

Good Questions, Hard Conversations, and Balance

Hospitals with the resources available often designate a palliative care team made up of doctors, social workers, and ethicists solely for the purpose of addressing suffering, alleviating pain, and facilitating discussion around the patient’s wishes for their care plan. A team like this has its place. But the lessons learned from hospice and palliative care can apply to every bedside clinician. Doctor Gawande spends pages presenting data related to these kinds of end of life situations. He points out several studies that found similar results observing patients with terminal disease. To highlight one, in 2010, a seminal study from the Massachusetts General Hospital described surprising results. In this study, 151 Stage IV lung cancer patients were randomized to either usual oncology care or usual oncology care with the addition of a palliative care specialist who visited them. Focused on preventing and relieving pain and suffering, those that saw a specialist discussed their goals and priorities in the event that their condition worsened. Patients that simply talked to the specialist “stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25% longer”(177). This finding in itself is interesting and counterintuitive.

But not all hospitals, especially those that are smaller or more rural, have this kind of resource. Families need people to talk to in the moment and before a major medical decision is made. They need to be encouraged to talk together about their priorities. Bedside workers naturally build trust as they care for their loved ones and are often privy to the feelings in the room. What I am promoting, then, is the development of a relationship of trust while pursuing both longevity of life and the flourishing of that life in the midst of suffering.

Doctor Gawande lists four helpful questions he regularly uses in his practice to steer the patient and family to a conversation different than just the next step in prolonging life.

1. What is your understanding of where you are with your health?
2. What are your worries for the future?
3. What are your hopes and priorities?
4. What are you willing to sacrifice, and what are you NOT willing to sacrifice?

Although these questions may be more suitable for an adult end of life situation, these questions should be answered early and often as health conditions change. Some of the answers to these questions may lead us to meet, not just a person’s medical or bodily needs, but their purpose for living. When these questions prompt conversations about their worries, fears, desires, and priorities, the care can shift appropriately to something other than mere preservation or doing only the safest thing. But if we never give patients or families the chance to consider something other than the pursuit of longevity at all costs, that preservation of life is all they can sometimes see and doctors will always offer something to try. There is a hopelessness in that focus on earthly preservation when the reality of death sets in. But if we can help them find flourishing with what little life might be left, the pain of loss and grief can be a very different and more positive experience. Our machines and therapies can bring preservation of the body, but only for a time, and not with the comforts and alleviation of suffering the way that a balanced view of the person can.

Sometimes I think with this emphasis on finding “what matters most” to the patient and family, which sounds cliche, that I’m falling short of my task as a Christian. Sometimes I’m disappointed when I don’t find opportunities to ask the most important questions about a person’s soul and relationship to their Creator who gave them life in the first place. While I hope there is opportunity to help your patient and family to look heavenward in the midst of suffering, loving our neighbor in our calling as healthcare workers often occurs in the mundane.

Continue to honor the desires of the family in pursuing longevity of life, even when the situation seems bleak and it appears that more harm and suffering is happening as a result. Continue to respect the person that you are taking care of even when they seem lifeless. Continue to be faithful in that calling towards fellow image bearers, no matter how marred that image may be, in the simple service of meeting their bodily needs day to day. Continue to keep in mind that man's tinkering will not jeopardize God's sovereignty over life and death. Not everyone is equipped in the same way for relationships or the more difficult conversations and counseling. But I challenge the Christian reader and healthcare worker to make time for real relationships, encourage families to ask good questions, and be slower to speak and quicker to listen to facilitate hard conversations. This is also a challenge I make to myself every shift in the ICU, even if it’s just one of my patients or families I take the time to talk to on a more personal level. I hope that taking up this challenge we will strike a better balance between pursuing longevity and the flourishing of the gift of life that’s before us.

References:

Gawande, Atul. Being Mortal: Medicine and What Matters in the End. Metropolitan Books, 2014.

Lewis, C.S. The Joyful Christian. HarperOne, 2000.