End-of-Life Choice, Palliative Care and Counseling

Posts Taggedtorture

Everyday Elder Abuse

Tomorrow is World Elder Abuse Prevention Day. It’s a day to appreciate that elders in our society endure abusive behavior every day and to consider how we might remedy this deplorable situation.

We hear of instances in which families, caregivers or others physically assault or verbally abuse elders in their care. Whether these instances arise from criminal pathology, frustration or plain meanness, we should all be on the lookout for such abusers, report them to authorities and encourage punishment.

Compassion & Choices focuses on other forms of abuse — the ones most commonly and even routinely — inflicted on elders. These forms are rarely recognized as abuse and are never punished. I’m talking about the pain, torture and invasion of bodily integrity from “heroic” and futile medical procedures associated with end-of-life care.

Most elders in this nation die in acute medical facilities. Even those whose deaths are anticipated following a long battle with cancer, heart failure or lung dysfunction do not die in the peace of their homes. Even they, the long-time dying, must endure the cold mechanical interventions of intensive care. Often in violation of express wishes stated in an Advance Directive for Healthcare, our elders must bear insertion of tubes to measure arcane pressures, tubes to breathe, to siphon throats, to empty urine, to drain fluids, to administer food and fluids. They must submit to the constant clicking, humming, droning and ringing of the machines and alarms at their bedside.

Add to this scene severe and unnecessary suffering from inadequate treatment of pain. Add to this a rampant failure to acknowledge and palliate agonizing symptoms like breathlessness, itching, hiccoughs, nausea, dizziness, bedsores and draining wounds of surgery .

What emerges is a picture of widespread, systematic, Medicare-supported torture of our elderly, dying citizens. Shame, shame on us for using taxpayer’s money in this indefensible manner.

When an 85-year old man like William Bergman, dying of mesothelioma, moans in pain with every breath, as his daughter pleads with doctors to prescribe more effective pain medication, that is elder abuse. Compassion & Choices won a court judgment to that effect, the first of its kind, in 2001.

When an 82-year old woman like Margaret Furlong receives full cardio-pulmonary resuscitation in violation of her Advance Directive, and endures ten days of intensive care despite squeezing her son’s hand to communicate her desire to have her hands untied and machines discontinued, that is elder abuse. Yet when Compassion & Choices helped bring this case as elder abuse and failure to honor an advance directive, it was thrown out of court.

When medical providers encourage irrational hope in endless rounds of chemotherapy for advanced, end-stage cancer, that research indicates are unlikely to extend life but sure to degrade its quality, that’s elder abuse.

When institutions withhold vital information about medical practices like terminal sedation or aid in dying, which they deem immoral, and hold patients hostage to their own beliefs in the redemptive power of suffering, that is elder abuse, and abrogation of informed consent principles. Catholic facilities that enforce gag rules and bar conversations about legal aid in dying, even when a patient inquires, are doing just that in Oregon and Washington.

Compassion & Choices is not alone in naming such examples “abuse” and “torture” and citing them as human rights violations. International conventions, treaties and courts demonstrate an understanding of the veracity and gravity of such charges. Numerous internationally recognized principles address patient care and the right to bodily integrity.

The European Charter of Patients’ Rights for example sets out, “Each individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness. The health services must commit themselves to taking all measures useful to this end, like providing palliative care treatment and simplifying patients’ access to them.” Policies restricting opioid availability and causing patients to suffer unnecessary pain abridge the human right to be free of torture.

The European Committee for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment, has stated, “[E]very competent patient…should be given the opportunity to refuse treatment or any other medical intervention. Any derogation from this fundamental principle should be based upon law and only relate to clearly and strictly defined exceptional circumstances.”

This year, let’s acknowledge our national habit of over-treatment at the end of life for what it is: elder abuse, torture and a violation of human rights. Let’s stop withholding information, ignoring wishes and inflicting elders with futile, painful treatment and unnecessary pain and suffering. And certainly, let’s stop using Medicare taxes to pay for this national scandal.

Healthcare Reform and the Price of Torture

In this country we usually torture people before we allow them to die of whatever is killing them — cancer, emphysema, the multi-organ failure of diabetes or heart disease.

Like the episodes of military torture from which our nation is recovering, medical torture reflects a culture and a set of assumptions. Reform is not about just identifying a few “bad actors” and weeding them out. Our medical-industrial complex follows a cultural paradigm to do as many things to people near death as is medically possible. Our broken system rewards that paradigm with fee-for-service payments.

Standard routine is to torture those in the process of dying by inflicting upon them a host of toxic chemicals, invasive machinery and painful surgeries. It’s the American way of dying — agonized and prolonged imprisonment in an intensive care unit, pinned down under a maze of tubes and machines, enduring one medical procedure after another, unable to hold or be held by loved ones.

It’s an American tragedy, really. Every player in the medical-industrial complex is in on it.

Oncologists entice their dying patients into bearing one more, experimental round of chemotherapy almost certain to intensify toxic symptoms without extending life. Surgeons repair the fractures and amputate the limbs of people clearly only a few weeks from death. The newest medical specialists, “hospital intensivists” deftly thread tubes into failing hearts and attach ventilators to decrepit lungs. Much of the pain they inflict does nothing but monitor the chemistry and pressures of internal crevices and gather the information necessary to thwart a body trying to shut itself down.

Hospitals build bigger spaces and place ever more complicated technology at the fingertips of aggressive specialists. Behind the scenes pharmaceutical companies and medical equipment manufacturers produce the instruments, devices and chemicals of torture. And insurance companies pay by the procedure, feeding the bloated growth of an industry.

What is the price of all this? At Compassion & Choices we focus on the human costs. We expose how much end-of-life care merely prolongs a miserable dying process. We work to break the pattern of expectations and behaviors that rob people of dignity, peace and comfort at the end of life. We work for changes in law and policy to help those who reject futile heroics to die at home, with hospice care. We show how families can face loss and sadness together, close at the bedside of their dying loved one. We know the greatest price of end-of-life torture is the human cost.

But no one can ignore the fiscal cost of a system run amok. We cannot reform our healthcare system without addressing the fact that it is driven by profits. Medicare, as a public system, is the only source of comprehensive data on expenditures. Approximately 5% of Medicare beneficiaries die each year and in 2006 30% of the Medicare expenses were for their end-of-life care. 10% of all Medicare costs occur in the final 30 days of life. Most of the money goes toward intensive care and treatments intended to extend life, like feeding tubes and mechanical ventilators.

Here’s the irony. These exorbitantly expensive tortures do not even serve their goal. The authoritative study on this came out this March. Its conclusion:

Analysis demonstrated that higher medical costs in the final week of life were associated with more physical distress in the last week of life and with worse overall quality of death as reported by the caregiver. There was no survival difference associated with higher health care expenditures at the end of life.

How do we reform this profit-centered industry and remake it into a patient-centered one? How do we deliver the comfort care and supportive services people truly want and need at the end of life?

Like all cultural shifts, it must start with the people. The people — you — deserve to be able to choose a healthcare plan driven by what patients need, not what profit demands. You deserve a system that pays your doctor to talk with you about peaceful endings when death is imminent. One that pays for hospice care in the home as readily as it pays for intensive care in the hospital.

Raise your voice. Make your views known. Talk to your own doctor and to your family. Take action with calls to members of Congress and letters to local news outlets. Ask for healthcare reform to include payment for your doctor to talk to you about your end-of-life wishes. We make it easy for you here. Tell them you reject torture at the end of life for yourself and you resent the needless torture of others. Joining together, let’s change the American way of dying.