Charleston, South Carolina, United States
Photography by Aldaron
Selfishly, time is either too short or too long, the moment never appreciated.
Mrs. Jones was a 69-year-old female with widely metastatic ovarian cancer, diagnosed during an emergency room visit for abdominal pain. After consultation with an oncologist, she elected to forgo chemotherapy and was referred for palliative care.
“Mrs. Jones, we can hope for the best, but we must also prepare for the worst.”
“Does that mean I’m dying soon doctor? How much time do I have? I don’t really want to die.”
“I can’t say how much time you have, but you have a serious illness that will eventually take your life; so treasure each and every day and the time with your family. We’ll treat any symptom that arises and give you the best quality of life for however long that may be. I would also recommend a referral to hospice, a wonderful program for both you and your family.”
“Hospice? Hospice? That’s for people with no time left. My cancer doctor told me I have six months at least!”
Time is a collection of seconds, minutes, hours and days, an invisible and elusive force that passes with little-to-no acknowledgement other than the annual remembrance of birthdays, anniversaries, graduations, and holidays. But to someone with a life-threatening illness, time becomes the enemy, trickling away far too fast, racing towards the marking of another remembrance: death. The absence of a tomorrow, of no more time, is one of the greatest causes of suffering at the end of life, as was the case for Mrs. Jones.
But this doesn’t hold true for everyone.
Mr. Adkins was a 94-year-old man with a blessed life; he had no illness until a diagnosis of multiple myeloma a couple of years ago, which had now quieted and caused no real difficulties with his daily living. But now he lay in a bed, intermittently awake, intermittently agitated, as his 88-year-old wife sits bedside bemoaning that “it wasn’t supposed to be like this.”
“Why can’t you speed this along doctor? No one should have to suffer like this. They shoot horses don’t they? Why can’t you do something?”
“I don’t think he’s suffering right now, Mrs. Adkins, and if he does, we have medications to help ease his pain, agitation, or any other problem that occurs.
We cannot purposely hasten death in South Carolina, but even if we could, I think he’s comfortable right now. Talk to him; hold his hand; let him know you’re here. You know Mrs. Adkins, it’s harder on you now than it is on him. You’re the one suffering—how can I help you?”
“We were supposed to die of heart attacks, suddenly, not linger like this. This is horrible, just horrible.”
For some, time cannot pass fast enough—there is an urgency to finish, to hasten life’s end, to say the final goodbye, to delve into the endless landscape of grief and bereavement, and to just plain move on. This urgency can affect the patient, the family, or both, but this urgency often develops from unrelieved suffering of both the patient and/or family, or from the desire to prevent a prolongation of the inevitable, which is an admirable show of unconditional love. In this case, Mrs. Adkins emotional, and perhaps spiritual, suffering had precipitated a desire for an end to her husband’s time, in spite of their deep love and seventy years spent together.
Mrs. Blackstone was a 55-year-old female in the medical intensive care unit (MICU) with anoxic encephalopathy complicated by renal failure, worsening liver function, and hypotension requiring vasopressors. After feeling ill for two-to-three days, she collapsed while at home just twenty-four hours prior to admission, and she had passed an estimated fifty minutes without any competent effort at cardiopulmonary resuscitation. Palliative care was consulted, and a family meeting was convened at the request of the palliative care physician. Twelve family members appeared for the meeting, including Mrs. Blackstone’s four daughters and husband.
“Why are we here? You met with us yesterday, why are we here again?” A middle-aged man that Mrs. Blackstone raised “as her own child” appeared upset with the meeting.
“We’re here to discuss our concern about Mrs. Blackstone’s current and deteriorating condition. We think it is important that you all understand how sick Mrs. Blackstone is so that we can decide what direction we’ll take.”
Dr. Apply, the attending MICU physician, explained that Mrs. Blackstone had no evidence of brain activity, her kidneys had failed, and her liver function was worsening.
The middle-aged man, appearing angry, spoke again. “So you want us to pull the plug, that’s what you want don’t you? Just kill her?”
With the help of the palliative care physician, Dr. Apply explained again that no matter what was done, Mrs. Blackstone would die. We were meeting to hear family members’ thoughts and concerns in order to understand what Mrs. Blackstone would want if she could sit up and talk to us.
“I can’t do this; I can’t do this.” Her husband spoke, then stood to leave.
“You gotta keep doing what you’re doing; you can’t stop treating her. God will do what he has to do.”
For others, time seems ignored or irrelevant—but what cannot be denied is the steady and unrelenting passage of time. We try as hard as we can to make time stagnate so that things can change for the better or things can stay as good as they are right now. Yet no matter what we do, “now” can end far too soon. But we must remember that patients and families often need time to digest and absorb troubling and heart-wrenching news. As healers, we must allow this time, even though we know the moment may pass all too quickly.
The stories of these three patients remind me of the gift of time—a precious and intangible commodity that is guaranteed to no one, but wanted by all. These stories also remind me of my impermanence. The old cliché that all we have is the present moment is true, but until disease knocks on our door, we just don’t appreciate the brittle nature of time. While time is fleeting, it is also more than an ill-defined lifeblood in our brief presence on earth—it is hugs, smiles, holding hands, and quite simply, being in the presence of a loved one. But time does leave us, often much more quickly than we expect, as it did for Mrs. Jones, Mr. Adkins, and Mrs. Blackstone. To that end,their deaths should remind us of our own transience and the needforongoing reflection in caring for our patients. We always think we have the time—but we don’t. We must remember that and let our families know that we love them. When we care for our patients, we must treat them as we would our families—every second, every minute, and every hour of every day—until their time is no more.
Names and some details have been changed to protect the identity of the patients and their families.
PAUL ROUSSEAU, MD has been practicing hospice and palliative medicine for 30 years and writing most of his life. He has 350 publications, including pieces in journals such as JAMA, Annals of Internal Medicine, Journal of Palliative Medicine, Blood & Thunder, The Healing Muse, and Pulse: Voices from the Heart of Medicine. He uses writing as a way to reflect on the patients and families that he cares for on a daily basis who are battling the ravages of life-limiting illnesses.