Atul Gawande’s beautifully written article in the New Yorker this past week, Letting Go, tells poignant stories of young men and women coping with end-of-life issues in the American health care system. One of the greatest obstacles to achieving a “meaningful death” in America is that this concept is not integrated into our culture. Survival, cure, prolongation of life – we do these things very well. But when it comes time to contemplate the dying process, we are often overcome by fear, uncertainty, and worst of all – denial.
Historically and culturally, people have dealt with the dying process and with letting go in a variety of ways. Nomadic tribes often left the elderly behind to die alone – they were sacrificed for the greater good and for the survival of the tribe. In some regions, such as West Africa, funerals can last up to an entire week. In China, if the deceased is older, in their 80s or 90s, the funeral becomes a celebration of sorts, and people are permitted to wear white and red rather than black. Each culture has a different way of letting go or of finding meaning in death. But at the present time in America, we struggle with this. Our small and fast dissolving family structure does not help – nor does a health care system which places emphasis on expensive, intensive, end-of-life care. Nor do overly optimistic physicians who cannot be frank with their patients about prognosis. But none of these isolated people or situations are to blame – the problem more complex than that, and it is not easily solvable.
The first point, which Gawande does not address in his article, is that age makes a difference. The elderly should think about their wishes for end-of-life care, and they should make these wishes known to their physicians and their families. They tend to have a much more difficult time surviving acute illnesses – myocardial infarction, pneumonia, even a urinary tract infection. And they should not spend endless days in the intensive care unit towards the end. For the most part, families have an easier time letting these people go. They want for them a peaceful death, without invasive procedures or aggressive resuscitation. If we take the time to ask, we are often able to make these patients comfortable sooner rather than later, and thus avoid the endless ICU admissions for patients in their 80s and 90s to which Gawande refers. This is the easier decision.
Every time a patient enters the hospital where I work, we ask questions about “code status” – whether or not patients want to be intubated or resuscitated. Some people are taken off guard by this, but once I explain to them why we ask everyone this question – and why it is an important question to think about – they become appreciative. Many patients have not thought about this question before coming to the hospital. I remember admitting an elderly woman with metastatic lung cancer to the intensive care unit several months ago. She was intubated in the emergency room prematurely – and this time, we were able to remove the tube in a couple of days. I asked her and her family if her oncologist had discussed with her end-of-life issues, such as how she wanted to spend these coming months and if she wanted to be intubated again. She shook her head – no discussion had taken place. Her family members hastened to answer the second question, saying that yes, of course she would want the tube, if she needed it to help her breathe. But I explained to them that, although the tube was removed this time, it may not be removed so easily next time. I told them that the disease we were treating – end-stage non-small cell lung care – was not responding well to chemotherapy, and that intubation – although possibly providing a temporary fix – would not take care of the true culprit, which was her lung cancer. They still insisted that she would want the tube. She sat there in front of me, unable to speak (at that time, she was still intubated). I told the family that I respected their comments, but I also told them that it was important to include her in the decision – it was, after all, her life. They agreed with me. I handed her a piece of paper and a pencil, and, after answering all the questions she and her family had, I posed the question to her. “Mrs. R, ” I said, “now that we have discussed all the possibilities, I want to give you the chance to tell me and your family what your wishes are. It is very likely, even if we take the tube out now, that you will need it again in the future. There is no predicting when this will happen – it could occur today, or it could occur months from now. But there will come a time when you will need it again. Is this something that you would want done again, to prolong your life?” She looked around the room at her hopeful family, then she wrote down a sentence and looked straight at me as she passed me the paper, where four words were written in capital letters, “I don’t want it.” There was a quiet in the room, but her family no longer insisted or disagreed with her. In fact, over the course of the next few days, they became more at peace with her decision and seemed content that they now understood very clearly what she wanted.
The more difficult patients are the younger ones. They, their families, and even we as physicians want them to survive. This hope often blinds our objectivity and skews the picture. It makes it harder to let go. When these patients ask me if they are dying, I often think to myself, “I know you are young. But everybody is dying. In the end, the survival rate is 0. It is not a question of if, it is only a question of when. And, although some of us may need to think about these issues earlier than others, we should really all be thinking about them.” I have taken care of young mothers with metastatic cancer and liver disease, in the emergency room and the intensive care unit. These patients are difficult. I often find that I am sad to walk in to their rooms and that I become naïve and hopeful – no longer a physician but an optimist – in the presence of them and their families. It is a natural reaction. Nobody this young should die, right?
Wrong. Even if it is not just, death can come at an inopportune time – right after the birth of a child, just before someone’s 21st birthday. Whether we like it or not, whether we agree to it or not, it happens. This sounds harsh. But I strongly believe that we owe it to our patients to be honest – not to take all hope away, not to place a time limit on their lives (for who are we to know?), but to be frank with them about whether we really think we can cure their disease. Even diagnoses without the frightening word “cancer” at the end can kill people – we saw that this past fall with H1N1, when young people in their teens, 20s, and 30s died in intensive care units across the country from a devastating flu. And diseases such as COPD and CHF are also terminal illnesses – although they may persist for years, there is no cure. Some patients who take medications for these diseases fail even to mention them on their past medical history – they figure, since they are taking a medication for it, they must no longer have the illness. They could not be more wrong – and, although end-of-life issues are a complex problem involving society, culture, and family – I think that doctors have a responsibility to step up to the plate when it comes to these diagnoses and to be frank about them.
But honesty does not mean taking away all hope. There are two things that I focus on when I am caring for patients at the end of life.
(1) “Doing everything” is not necessarily a good thing. We often perceive it that way, because we can write down something we have accomplished. But with every intervention comes risk – even with simple procedures, like placing a chest tube in a patient who is dying of lung cancer, there is a risk of infection or bleeding that could potentially be fatal. All interventions are not good interventions, and many times the invasive procedures that we can offer in the ICU do more good than harm. This helps families to feel that not “doing everything” also means avoiding potential pitfalls for their family members. It does not mean giving up.
(2) Even aside from hospice and medical care, there are other things we can offer patients. I watched my grandmother spend her last days in her home, after having Reiki performed by a neighborhood friend. She was more at peace after a Reiki session than she had been after any of her hospital visits. Other alternative therapies can be used as well – everything from acupuncture to meditation to yoga. These therapies will likely offer just as much evidence-based benefit as medical therapies for end-stage cancer (essentially none), but they will also make patients feel better, more relaxed. They will allow patients to enjoy their last days. Certain case-based studies indicate that they may prolong life, even if only for a short time.
Quality at the end of life is just as important as quality at the beginning of life. Dying a death under white lights in an ICU, on a ventilator, with lines comes out of every orifice of the body, is not a quality death. We should be proactive about letting our ICU patients know that it does not need to be this way - they can spend their last moments at home, with loved ones, with music playing, and with the goals of their care aimed towards comfort rather than cure, towards peace rather than chaos, towards calming rather than painful treatments.
If we extend our perspective beyond the health care system and the intensive care unit, and if we look even further into historical and cultural differences in end-of-life issues, we will become more enlightened about what a meaningful death really is. In the end, it is a private decision. But, as physicians, we can help our patients come to this decision by gently urging them to think about their wishes and by being open and comfortable in our discussions with patients about end-of-life issues – this will help both them and their families become more comfortable with it as well.
Even if a patient is dying, we still need to be good physicians. And, at this stage, the nature of our job changes but the tactics remain the same – we should present our patients with all the options, answer all of their questions, and encourage them to decide for themselves how they would like to live and how they would like to die. We should listen to them, we should care for them, we should not abandon them at this stage, and our path to good medical care should not be thwarted by their or our own hope – as a physician once told me, plan for the worst, hope for the best. That is the most we can do.