Quality of life (QoL) at the end of life (EOL) is improved when advanced cancer patients avoid being hospitalized, when their worry is reduced, they are given pastoral as well as medical care, and when they feel they are in alliance with their physician, show results of the Coping With Cancer (CWC) study.

To date, there is no comprehensive model for the strongest predictors of QoL at EOL, says the research team, but the findings indicate that when medicine is unable to offer patients a cure, physicians may still positively and significantly influence their patients’ lives.

The challenge, remark Alan Zonderman and Michele Evans from the National Institutes of Health in Baltimore, Maryland, USA in an invited commentary, is in physicians’ and caregivers’ ability to develop and maintain effective integrated relationships with their patients that are strong enough to deliver the emotionally difficult messages relevant to prognosis, among other things.

“Physicians are urged to recognize the need for individualized care that will facilitate setting of appropriate treatment goals and end points that focus on QoL, not solely survival at any cost,” they remark.

Using CWC data for 396 treatment-refractory advanced cancer patients and their caregivers, Holly Prigerson and colleagues observed that therapeutic alliance ‑ including measures of patients being treated with respect ‑ was among the most important predictors of QoL at the EOL.

They also found that patients who reported engaging in religious prayer or meditation had better QoL (measured using the McGill Quality of Life Questionnaire and DSM-IV) at the EOL (considered as the last week of life, as reported postdeath by caregivers), while dying in hospital, being admitted to the intensive care unit, and high levels of patient worry were among the most significant predictors of worse QoL at EOL.

“Attempts to avoid costly hospitalizations and to encourage transfer of hospitalized patients to home or hospice might improve patient QoL at the EOL,” write Prigerson et al in the Archives of Internal Medicine.

The team created a random-effects model of factors associated with QoL at the EOL, and the model with the best predictive accuracy (measured using CV statistic, or mean squared error) showed that 17.7% of the variance in QoL reported by study participants was explained by the factors included.

“Future research with assessments of hospital… and provider… characteristics and more comprehensive, prospective, repeated measures, particularly of therapeutic alliance and QoL is needed,” conclude the researchers.

The hospital delivered those treatments anyway. She spent ten miserable days in the ICU, tethered to machines and tubes and pleading for it all to stop. Finally it did, and Margaret died. Then the hospital billed Medicare for all her unwanted treatment and Medicare paid – without objection, with our taxpayer dollars.

Margaret’s story is far too common. At Compassion & Choices we intend to put teeth into advance directives, and we need your help.

It is well documented that although advance directives are offered and included in the medical chart – as the law requires – in the end they are usually ignored. The pattern is cruel and absurd, and even the medical profession is starting to understand that. Last year the Archives of Internal Medicine reported, “Persons dying in the hospital often receive burdensome care immediately before death that may not match patient preferences.”

Aggressive medical interventions in the setting of terminal illness do not prolong life, but they do increase the suffering of patients and their loved ones. Sadly, Medicare, Medicaid and private insurance carriers incentivize healthcare providers by paying for unnecessary and unwanted treatments.

This could end if public and private health payers required, as a condition of payment, that treatment in the weeks prior to death conform to the patient’s advance directive.

Here is one way you can help. Tell us if you know of a situation where a doctor or hospital disregarded a person’s explicit instructions or the instructions of a surrogate decision-maker. Your stories will help drive that point home with health insurers, hospitals, and health care providers.

As soon as providers realize the costly, unnecessary and painful procedures, tests and treatments they contemplate for a dying patient may be at their own expense, advance directives will acquire unprecedented power and authority. When providers choose treatment based on what patients want, we will have achieved real progress in shielding people near the end of life from the type of suffering Margaret Furlong endured.

“The study’s findings continue to confirm the safety and benefits of Oregon’s Death with Dignity Act,” said Barbara Coombs Lee, president of Compassion & Choices, the nonprofit organization that serves as the steward of the law and serves terminal patients and their families throughout the U.S.

Read the press release here