Posts tagged palliative care

We treat patients, not diseases.
All healthcare flows through the relationships between the healthcare provider and patient.
The spoken language is the most important tool in medicine.
Eric Cassell, Talking with Patients, 1985.
Do not stand at my grave and weep,

I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sunlight on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry,

I am not here; I did not die.
Mary Elizabeth Frye.

The Struggle

For weeks, a patient had been ambivalent, struggling with the decision between full medical care or comfort care only. It was only a matter of time between the disease would make that choice for her.

Everything we could do to prolong her life had been done. There was no process left to reverse. The disease was reaching its ultimate conclusion. With great reluctance, the patient agreed to comfort care.

It pained me to see her struggle because I knew how much it chewed her up inside, to leave behind her family and friends, to be confronted with the threshold of death. It was obvious she loved dearly and was dearly beloved.

I saw her briefly again today after finishing my rounds, passing through our hospice. After seeing her struggle for so many weeks with this decision, I was relieved to find her smiling, having finally found peace in these last hours, surrounded by friends and family. As they gathered to look at old photo albums and share stories under the warm winter glow, her eyes flickered with joy as she laughed with her grandchildren.

For a moment, our eyes met as she caught a glimpse of me by the nursing station. Quietly, we acknowledged each other.

The Palliative Performance Score is an 11-point scale designed to measure patients’ performance status in 10% decrements from 100% (healthy) to 0% (death) based on five observable parameters: ambulation, ability to do activities, self-care, food/fluid intake, and consciousness level.

The Palliative Performance Score is an 11-point scale designed to measure patients’ performance status in 10% decrements from 100% (healthy) to 0% (death) based on five observable parameters: ambulation, ability to do activities, self-care, food/fluid intake, and consciousness level.

Hospice Care.

A reader asked me what hospice means. To understand hospice, I need to discuss its purpose.

Hospice care is very specific to a terminal patient. It involves palliative or ‘comfort care’ for life-limiting illness rather than curative treatments. It involves professional medical care, advanced pain and symptom management, and emotional, spiritual and practical support based on the patient’s wishes and family’s needs. In Canada, the terms ‘palliative care’ and ‘hospice care’ are often used interchangeably. The word ‘hospice’ is sometimes used to refer to a home-like place where people spend the last days or weeks of life.

Death is a Continuum

  • Palliative Team: Do you know anything about or have ever considered hospice?
  • Patient: I know what it is but I am not interested.
  • Palliative Team: May we ask why that is or what you understand about hospice care?
  • Patient: Once you are in hospice, you are dying.
  • Distinction: Being in hospice does not initiate the process of dying. Death is being driven by the underlying disease. This is a common misconception and the role of hospice in the care of dying is an arbitrary distinction. The care of the dying can happen in hospice, in hospital, or at home.
Please do everything. I do not want to die. I am not ready.
A patient in terminal condition reaffirms her wish for full therapy instead of comfort measures only.

Opiophobia by LIFE Before Death.

The fear of dependence and addiction to opioids is something I have routinely faced on the ward in the past year. On this rotation, this fear can be magnified multiple folds. It is up to both the patient and the team to work together to find methods to control pain that respects the patient’s wishes.

Check out LIFE Before Death's YouTube channel for other video clips from their full-length film.

Bike Song by Sleepy Dreamers.

So far, I have discovered that palliative medicine can be tremendously rewarding but also very emotionally exhausting. Some patients are at peace with their decisions of comfort care; others meet us in fear and denial. But universally, everyone shares a sense of regret over the opportunities lost, the little things missed, and the future memories that will never be.

It is the duty of a doctor to prolong life. It is not his duty to prolong the act of dying.
Lord Thomas Horder, 1936.