This is what I know about death.
Admitted to a nursing home with a broken hip-dehydration, my ninety-eight-year-old grandmother awoke from a deep slumber, laughing and clapping her hands when my five-year-old daughter played the violin.
A week later she had a stroke and could not swallow.
We wanted to leap in and save her, but all we could do was swab her lips with lanolin as she lay gasping for water, or food or perhaps air.
It took days for her to die. A staunch Presbyterian, an even stauncher Republican, she had worked in her garden nearly every day of her life. Her heart and lungs were so strong they would not stop, even when we wanted them to stop.
An African-American colleague, raised by a grandmother in an old house in Oakland, refers to death as “crossing over.” Her family could barely afford air conditioning, much assisted living or serial emergency room visits.
Beginning in her childhood and continuing through every decade of her adulthood, she ushered more than a dozen of her caretakers and relatives into death, watching, waiting for the doctor’s footsteps, praying, listening to the sounds of the old house creaking. By her 40s, she was both traumatized and death-wise in a way that I would never be.
I envied her. She had a spiritual concept of dying, not a medicalized one.
I know from the controversial PBS documentary Lion in the House that physicians will do almost anything to avoid the “d” word with families whose children have end-stage cancer. They discuss treatment options and wait for the other shoe to drop, a dance which seems to drive their support staff insane. However kind, these physicians do not seem to think too much of the parents, considering them naive or uneducated — irresponsible, perhaps, if they are poor and overwhelmed. Certainly they, the parents, know little about death.
I know that cancer kids and their parents keep asking The Question in different ways, to be met by the Stone Wall. “We have exhausted all of our treatment options. We can do one more round of chemotherapy if that is what you want, but we don’t expect results.” Their best shot: “You should prepare yourselves . . .”
I know that parents of children with cancer seem unwilling or unable to distinguish death by poisoning (chemotherapy) versus death by the cancer itself. (Turning swollen and blue-green would seem to be a clue, or perhaps cardiac failure). Physicians deliberately blur the distinction. Certainly drug companies don’t advertise the fact that cancer patients die from chemotherapy, like it’s a big secret.
Children in a Buddhist village in Thailand know more about death and dying than most Americans. The Thai do not pack their elderly off to hospitals and assisted living. Even royalty do not pack their dead into morgues or coolers. Family members sit with their loved ones as they die. The bodies are taken to the Buddhist temple for cremation.
A man brought his elderly father to chat with the abbot of a temple in Northeast Thailand. “Get a doctor!” I wanted to scream as an old man ran through a litany of medical complaints. ”That is how it is,” the abbot responded calmly. “Life is suffering.” Together father and son made an offering, “making merit” (tham bun) for the next life. The monk chanted blessings. The pair went away, peaceful and accepting.
Meditation is popular with laymen as well as monks in Thailand. Buddhist doctrine states that life is suffering and suffering is caused by attachment, in particular, attachment (grasping) to the illusion of permanence. Depending on the teacher’s judgment, meditation subjects may include a Buddha image (peaceful detachment, control of the mind and senses); a lotus (beauty, impermanence); the entire life cycle (birth, youth, sickness, old age, death); or, for the spiritually intrepid, corpses.
The American approach: “Listen to Dr. Oz. Eat salmon. We can delay aging.”
In cultures less modern than ours, shamans or spiritual specialists usher the dying into the next life, offering knowledge and comfort to those who remain. The only equivalent in American culture, aside from rabbis and priests and ministers, is hospice care. I have yet to hear a Protestant minister elaborate on the death rattle, however, and hospice can be miserably difficult to access, even when the dying seems commonsense, obvious.
I was with my mother on her penultimate hospitalization for complications of arthritis-staph infection-heart attack. The doctor stonewalled when she demanded medicine to take the discomfort away. She was already on more than a dozen medications, interacting who knows how. The same when my brother panicked over her toe turning black. Yet even her rheumatologist, a longtime friend, would not sign off on hospice care.
The staff at assisted living quit answering her call light.
An ambulance was called for her final medical event. Ignoring the DNR, ER personnel treated her aggressively, seeking to avoid legal complication. Writhing in pain, fading in and out of consciousness — her nails gleaming with polish (a service of assisted living) — my mother’s last night on earth was one of harsh lights, jarring noise and invasive medical procedures which hurt and humiliated her.
She slipped into a coma and died the next morning.
Sherwin B. Nuland’s eloquent How We Die: Life’s Final Chapter (1994) describes death from heart disease, cancer, accidents, etc. The book won a National Book Award, yet otherwise savvy people in the medical field have not heard of it. A surgeon and teacher of medical history, Nuland regretfully recalls trying to “save” his brother from an incurable cancer, in a vain attempt to be a hero, subjecting him to futile treatments, marring his last days with pain.
I know from “Engage with Grace” on e-patients.net and The Health Care Blog that the holidays are a good time to have The Talk about preferred ways of dying. The Talk surely hastened my daughter’s return to college, yet now I know something new about her, and she about me. And I know that some god-awful percentage of health care costs in America is expended during the last few weeks of life.
The medicalization of death has left Americans in denial, failing our loved ones as well as ourselves.