Palliative Care: Something We All Want

As a hospice physician – in addition to my role as a doctor who treats cancer – much of my focus is on comfort care. Part of my motivation to study medicine stems from my childhood concept of who a physician was and should be: a healer and comforter. The physician of yesteryear came to the bedside to care for and comfort the sick (and yes, the dying). I love that the Latin root for comforter is confortare, meaning, “to strengthen much.” In Christianity, the Holy Spirit is also called the Comforter.

Frankly, all physicians should practice comfort care. We know we aren’t to harm our patients. That obligation not to inflict harm intentionally is the ethical principle of nonmaleficence. It is summed up in the Latin phrase Primum non nocere – First, do no harm. The Hippocratic Oath states, in part, “I will use treatment to help the sick according to my ability and judgment, but never with a view to injury and wrong-doing.” That oath – to help the sick – expresses our obligation to do good (the ethical principle of beneficence). Though the actual oath used in various medical schools has changed over time, the overarching mandate to help the sick – and, at a minimum, not to harm them – is universal.

What does it mean to help the sick? That seems, on the surface, like an obvious question. “To cure, of course!” we would say in the 21st century. But curing disease is a quite modern concept. For most of medical history, comfort care was the primary goal. Modern technology and the emphasis on cure got us advanced cardiac care, open heart surgery, amazing innovations in cancer treatment, and so much more. But by 1980, most people died in the hospital. This was rare just a generation or two prior to that, when nearly everyone died at home (or on the battlefield). 

Since 1980, the number of people dying in the hospital has declined somewhat, thanks in part to better end of life care (including hospice care). However, 7 out of 10 Americans still die in a hospital, nursing home or long-term care facility when 7 out of 10 of us say we want to die at home (only 25% of Americans actually do die at home). Utilization of hospice care at the end of life is still woefully low.

But, what about those in the hospital who aren’t expected to die, who want a better, more “comfortable” hospital care experience overall? “Cure sometimes, treat often, comfort always,” is a wonderful mantra attributed to the 19th century tuberculosis physician Dr. Edward Trudeau. This phrase sums up a newer movement in medicine called palliative care. 

Palliative care focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing any serious illness. To palliate means to relieve – literally, to cloak – with the focus being on symptoms. Symptom management obviously should not be limited to end of life care.

As an example, for an ICU patient suffering from an acute exacerbation of lung disease, probably on a ventilator for a short period of time (but expected to recover), the physician historically has been paying attention to oxygen and carbon dioxide measurements, volumes of air going in and out, the acidity of the blood, and other “numbers” that paint a picture of how the patient is doing. But not how the patient or family is feeling. Shortness of breath? Anxiety? Nausea? Pain? Dealing with prognosis and potential end-of-life decision-making? Social and spiritual support? These are issues that might benefit from a palliative care consult.

Every hospitalization (whether ICU or not) has the potential for needing some degree of palliative, or comfort, care in addition to and alongside the acute medical needs that precipitated the admission in the first place. Often, the treating physician can and should address these needs. Quality metrics such as patient satisfaction, length of stay, and even cost of hospitalization are improved with good symptom management.

And, believe it or not, sometimes patients live longer with good comfort care! In my field of oncology, randomized trials have shown improved quality of life and even improved survival with early use of palliative care. The American Society of Clinical Oncology (ASCO) recommends the integration of palliative care with conventional oncology treatment, and the American Society for Radiation Oncology (ASTRO) has urged early palliative care referral when cure is not expected, even if death is not imminent and treatment still is ongoing.

CHI St. Luke’s Health Memorial in Lufkin will be starting a new palliative care consult service later this fall. A team consisting of a physician, nurse, and social worker all certified in palliative care will be available to consult with and advise physicians on any patient with difficult to manage symptoms, regardless of whether or not the patient has a terminal prognosis.

As we learn more about palliative care, we remember the Golden Rule: “So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets (Matthew 7:12, NIV).” 

Comfort always.

Recognizing Stages of Grief

My father recently passed away from pancreatic cancer at age 81. What a devastating disease! He lasted a mere two months. Thanks to attentive physicians and great hospice care, he was comfortable and at peace when he died.

For my mom, who was married to my father for nearly 60 years, grieving will be a process. In the medical field, we are taught to think about grief in five stages first described by Elisabeth Kübler-Ross in 1969: denial, anger, bargaining, depression, and acceptance. Watching my mom walk through my father’s diagnosis and death, I caught glimpses of many of these stages in her emotions and responses. It is important to note that these stages were never meant to be all-inclusive or rigidly ordered. Depending on circumstances, certain stages may be more prominent than others, or not experienced at all.

Denial is indeed often the initial response to hearing that you have (or a loved one has) a terminal disease. We just can’t believe it is happening, especially when the one with the diagnosis looks so well on the outside or doesn’t feel that bad. Unfortunately, denial can result in poor judgment. Luckily for my parents, any flashes of denial were tempered by solid medical advice and faith in their doctors.

Anger is one of those ugly emotions that can pop up at any time. But, it is one that is not difficult to understand. I typically see anger as a reaction because of dreams that will go unfulfilled. My mom was humorously a little miffed that my father didn’t make it to their 60^th anniversary in April. But anyone familiar with my mother knows she is too strong a Christian to be truly angry. Significant, unresolved anger can signal deeper emotional or spiritual needs that can affect everything from pain management to dying a peaceful death.

Bargaining is the most interesting stage to me. There is a deep desire in us to bargain as Faust did with the devil for something unattainable… in this case, a cure. Sometimes we bargain with God: “If only you would spare him, I promise I would do anything!” In the terminal cancer arena, this bargaining often takes the guise of a search for alternative, unproven “snake oil” treatments. (Mexico, anyone?) To my parents’ credit, they did not pursue futile, expensive elixirs or elusive cures.

Depression and acceptance tend to wrestle with one another, with melancholy eventually fading and acceptance gaining the upper hand. At least that is what we expect with typical grief.

My mother is a strong, confident woman. She held her head high at my father’s funeral and presided over the reception and luncheon with poise and grace. She so appreciated having her sons and relatives with her! I feared she might not do well by herself after everyone left, but she firmly informed me that she needed some time alone to grieve. For her, that was the right decision. She will cry; she will remember. But she will go on, I have no doubt.

Grief shouldn’t be buried. Tears are OK, even desired. However, debilitating, ongoing depression is not healthy. A minority of people experience a complicated grief that requires significant emotional, psychosocial, even medical support. Hospices are obligated to offer bereavement services for families of patients. What most don’t know is that you don’t have to have lost someone on hospice to join a hospice bereavement group! If you are grieving a recent loss and want to talk to someone or participate in a support group, contact your local hospice for help. You don’t have to grieve alone.

Being There for Those Who Suffer

Two articles appeared recently in major newspapers discussing how we can be more helpful to those who are suffering. The New York Times article by David Brooks (The Art of Presence) looks at helping those who are experiencing tragedy, while The Wall Street Journal column by Elizabeth Bernstein (To Be a Friend In a Time of Need, Talk Less, Listen More) specifically addresses helping those with depression. The lessons of each apply equally well to anyone who is grieving or suffering. To me, Brooks sums up our mission with one word: presence.

What does presence look like? Better yet, what does presence sound like?

First and foremost, silence. That means shut up. When I am sick or grieving, I don't want or need your advice unless I ask for it. Don't tell me I should go see XYZ doctor just because you or your Aunt Melba did. I can make my own decisions, thank you very much. But do let me vent sometimes, without thinking you have to fix it for me. Just be there for me; that is comfort. The Latin root of comfort means to come along side with strength. The Holy Spirit is also called the Comforter. Isn't that a beautiful image?

As friends, we don't feel very strong, though, so we try to overcompensate. Why do we always feel we have to solve someone's problems, rather than quietly comforting? Bernstein notes how we can comfort others with our notes and cards. Brooks agrees it is often simple non-verbal expressions like bringing soup that mean so much. Both emphasize: listen.

When I was in college, one of my best friends was very ill in the hospital from juvenile rheumatoid arthritis. She nearly died. She was a baby Christian, and I tried to "be there" for her. Unfortunately, there were others who told her that her faith was not strong enough or she wouldn't be sick. Not only is that terrible theology - Job, anyone? - it is devastating psychology.

Often, what presence boils down to is time. I remember conversation I had recently where I delivered some devastating news to a patient and her caregiver. It was near the end of a long day, and it would have been so easy to say some platitudes and "give hope" when what was really needed was simple truth delivered with compassion and grace. When the visit was over, the caregiver followed me out into the hall and said, "I know you are busy..." That's when I stopped in my tracks, paused, and replied, "You are the most important thing right now."

She asked some particular questions that made me realize we needed to have a much deeper conversation, and that the "truth" I delivered needed a little more "presence". So, we went back into the room and had the unrushed conversation we should have had all along. We talked much more about prognosis, treatment options, and whether or not to continue with plans to see another specialist and get more tests done.

Ultimately, I recommended hospice care - end of life care focused on comfort rather than prolongation of life. I wasn't sure if the patient would agree. But this lovely woman – who couldn't speak from a prior stroke, but who could understand fully the intricacies of the conversation – looked at me and gave me the most peaceful smile I have ever seen, along with her faltering, "Yes."

At the end of a busy day, that smile meant the world to me. The gift of presence, returned with a smile.