The other day I was in a visit with a patient who was mortified and frankly in tears because their oncologist told them they had "failed" chemotherapy. Like chemotherapy was this test they should've studied for, and if they had only done better, then well, maybe there would have been something left to do. Because that was the other message they received, "there is nothing more we have to offer."
Recently a friend asked about my work and how it relates to what Dr Miller does. My work is not strictly the business of palliative care, though I have some skills (as any physician should) in this area. And although I do some hospice work, it is not that either. What I do, as my main doctoring gig, is meet people where they are and try to be a guide of sorts, as well as let them lead the dance now and again. Now, I can just see some of my old-school mentors barfing into their mouth a little at this description of doctoring. We are really supposed to be scientists, technicians, and masters of death, right? Our patients come to us for answers and solutions, yes?
I am going to get back to this point in a minute, while I pause to give you a holy sonnet by John Donne. Which has the point that death should not be so full of itself. Is death the be-all and end-all? Should we fight it with all our might? Should people die, actually? Because when they do it really feels terrible. Is death a beginning or an end? Is death just another phase of life? Should doctors be good at end of life care?
Which brings me back to the barf-inducing take I have on excellent doctoring. I propose though, that it is scientifically sound and as an approach might actually let people live longer. Like, all the way until they die.
A few things about what I believe are requirements for health:
1. Civil Engineering.
2. Freedom from terror, and a place to call home.
3. Trust that your society and community have your back.
4. Healthy food, adequate exercise and decent sleep.
5. Good luck.
6. Knowing what matters to you and what matters to those you love, especially if you are their Durable Power of Attorney for Healthcare.
7. Occasionally, extremely cool technology like transplants, gene therapy, extraordinary medications, and the like.
8. 3-D Printers. So damn cool.
Number 6 above is well explored in Gawande's book Being Mortal. Number 6, that is Beethoven's 6th, would also be one of the songs on my deathbed playlist, a concept introduced to me by a hospice nurse I don't know well, and whom lives across the country from me but with whom I feel a connection. Maybe we met once in another life too? Do we get more than one life? What say you, Tomás?
Number 6 is where I find my groove as a physician. The people I serve are not easily classified, but share being on the older side and medically complicated. I (usually) know just what medications to prescribe, and just what tests to order and when to call in the specialists and when to call in hospice. This is why I spent years of my life training to be a doctor. But none of it, NONE OF IT, matters if I do not understand their goals of living. And then get out of the way, much like BJ Miller got out of the way so the young man in that article could live out his days without the specter of a "physician guru" all in his space.
In a practical sense, there are dozens of examples of doctoring with the spirit of palliative care throughout the spectrum of illness and life. Yes, there are technical aspects (symptom control, a multidisciplinary team approach, excellent and learned communication skills). But often it comes down to recognizing the person wearing their disease(es).
Here are things I consider and my team does and I argue anyone claiming to be a healer, particularly toward the end of life should have some clue about:
Is that person feeling safe and dignified?
Who do they need to see or speak with, especially if they are nearing the end of life?
What kind of atmosphere do they wish to live in as they near death?
Do they need to go down in flames (prolonged ICU stay, last ditch futile medical efforts) to feel cared for, and if so, why?
Would you be surprised if they were not here in 6 to 12 months? If so, might they consider hospice care, which is grossly underutilized? And, ironically, hospice can often extend people's lifespan due to the tender loving care and de-escalation of toxic medical therapies.
Do they need a palliative care consult? There are actually specialty trained physicians with teams who do this well, including a great and innovative team, right in this town.
In regards to the elderly, do they even want to be hospitalized, and if so, do they have someone to advocate for them while they are there? Hospitals are uncomfortable and can lead to confusion and debility sometimes for weeks to months in older adults.
Do they need spiritual support?
Do they even like harp music? I don't, so please, no harps at my bedside when I am in my last days! No offense to harpists, or lovers of harps or harpists, or family members of harpists, or harp makers or people who kind of like harps.
Do they need their toilet unplugged? Because this is a real issue for some people living in less than desirable housing situations and our team will unplug a toilet in the name of comfort and good health (see number 1 above, civil engineering).
Just some of the other things our team has done: cut invasive bamboo, cleaned massive garbage piles, offered mindful meditation by a trained coach, prescribed tai chi, prescribed writing letters to great grandchildren (on an actual Rx pad, for the person to bring home, and it was tucked into their bra at the visit so I know they took it seriously), provided blankets and heaters for cold apartments and homes, cooked dinner on house calls, gone to bat for people with their slum lords, helped find safe refuge from abusive situations, advocated for the autonomy of our "patients", helped find housing, provided showers for people, including those who have not had access to a shower for a year, prescribed and helped purchase comfortable and appropriate shoes, reunited estranged family members, and prescribed the 4 important things to say before we die (Thanks, Dr Byock).
The 4 things:
1. Please forgive me
2. I forgive you
3. Thank you
4. I love you
Death, be not a competition. "Dying Well" and a "Good Death" are good catch phrases to get us talking about it, but these sayings also kind of irk me. Often death just plain hurts, and sometimes it is mundane. Frequently it is fraught with the unfinished business of families and friends. Too often it strikes those who have not yet had a chance to live fully, and that does not just mean "too young", because I have known some very young people who died having lived fully, with incredible presence right until the very end. And sometimes death strikes when unexpected, and does not allow anyone to even ponder the idea of a good death. Sudden death is like a meteor out of nowhere and the crater it leaves behind can be formidable.
Death is not negotiable. But excellent care at all phases of life, including the last one, should be expected, the same way we expect good care when we give birth, or when we take our kids in with a broken arm, or when our appendix bursts or when we have pneumonia or when we have a potentially curable yet serious illness. It does not take a master like BJ Miller to offer compassionate and decent care in the face of serious illness or dying. It should be the norm. But thank God for people like BJ for having the courage to show us that suffering can be tended to, most especially if we acknowledge it as part of being a human being.
I have had a fair amount of loss in my life, and in recent months have watched friends and family mourn for loved ones, and a nation mourn for a bunch of iconic, lovely people. Let us not forget the very real fact of mourning. Tending to the dying can be beautiful, but it is never easy. Continuing living after saying goodbye? Now that takes a special kind of courage.
Grief
Trying to remember you
is like carrying water
in my hands a long distance
across sand. Somewhere people are waiting.
They have drunk nothing for days.
Your name was the food I lived on;
now my mouth is full of dirt and ash.
To say your name was to be surrounded
by feathers and silk; now, reaching out,
I touch glass and barbed wire.
Your name was the thread connecting my life;
now I am fragments on a tailor's floor.
I was dancing when I
learned of your death; may
my feet be severed from my body.
is like carrying water
in my hands a long distance
across sand. Somewhere people are waiting.
They have drunk nothing for days.
Your name was the food I lived on;
now my mouth is full of dirt and ash.
To say your name was to be surrounded
by feathers and silk; now, reaching out,
I touch glass and barbed wire.
Your name was the thread connecting my life;
now I am fragments on a tailor's floor.
I was dancing when I
learned of your death; may
my feet be severed from my body.
