Palliative Care and Quality Of Death


We talk a lot about quality of life in our daily lives, but what about quality of death?  In many instances, a loved one is diagnosed with a terminal illness that results in an end of life pain management regimen and hospice care.  According to the Economist Intelligence Unit cited in the article below, the U.S. ranks 9th in the global Quality of Death Index, which bases its statistics on a country’s availability and quality of palliative care, the existence of adequate hospice programs, and strong community involvement on the issue.

As the article illustrates, Uganda became one of the top ranking developing countries on the Quality of Death Index thanks in part to the efforts of Dr. Anne Merriman, a British palliative care physician, who expanded the availability of opioid painkillers to terminally ill patients.  As Dr. Merriman puts it, “Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days.”  Read the article below to see more insights from Dr. Merriman and the often overlooked topic of quality of death.

How Uganda Came To Earn High Marks For Quality Of Death

By Rae Ellen Bichell | NPR News

Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.

“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.

Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.

Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management -– before Germany did. And Hospice Africa Uganda made liquid morphine.

“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”

So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.

Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.

Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”

Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.

Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.

Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.

Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”

For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.

“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”

Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”

In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.

“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.

Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.

Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.

“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.

Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.

Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.

Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.

“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.

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