End-of-Life Care

More than 15 years after a leading health advisory organization recommended ways to reduce the suffering of the terminally ill, the U.S. still has a long way to go to improve its end-of-life care, according to recent research.

While the country lags behind in certain quality measures, some experts say the healthcare system is already well equipped to prepare Americans for dying.

Many medical decisions are a question of balance — do the benefits of treatment outweigh the potential side effects, for example.

These issues loom even larger toward the end of life, as doctors turn to an ever-increasing array of high-tech tools to prolong a patient’s life. But this often comes at the cost of quality of life.

Read More: End-of-Life Care: What Doctors Want for Themselves »

U.S. Lags Behind in ‘Quality of Death’

In a 2010 report, the Economist Intelligence Unit ranked countries according to a “Quality of Death Index.”

The index took into account factors such as the availability of hospice and palliative care — both aimed at supporting dying patients and their family members. It also evaluated training for doctors and other healthcare professionals in end-of-life care, as well as the use of appropriate pain medication.

According to this report, the U.S. came in ninth, trailing behind many other developed countries.

The United Kingdom led the world in quality of death, partially as a result of its hospice care network and mandatory end-of-life care. These were rolled out across the country’s National Health Service, which provides universal healthcare to UK permanent residents. The country also ranked high for public awareness of end-of-life issues.

man and doctor

Improving late life care in the U.S. is not a new issue. A 1997 report by the Institute of Medicine called for a shift in how the United States deals with dying. But in spite of that, a recent study published Feb. 3 in the Annals of Internal Medicine concluded the U.S. still poorly manages many common end-of-life symptoms.

The study focused on the death experiences of 7,204 patients 51 years or older between 1998 and 2010. Family members were asked about the patient’s symptoms during the final year of life.

Over the course of the study, certain symptoms became more common. Reports of pain increased by 12 percent while depression increased 27 percent and periodic confusion 31 percent.

Because the study only followed patients through 2010, it’s difficult to know whether the prevalence of these end-of-life symptoms has decreased in the U.S. since then. The researchers intend to continue their work to better understand what’s behind this rise in symptoms.

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U.S. Has Tools to Manage End-of-Life Care

Based on these findings, it appears the U.S. has work to do to catch up with other countries in quality of death. For one thing, unlike the UK the United States has a fractured healthcare system made up of separate hospitals, clinics, and doctor’s offices that don’t always communicate or align their priorities.

But some healthcare experts say the U.S. is already well prepared to meet the needs of people who are dying.

“The hospice movement in the United States has a very robust and rigorous set of standards and guidelines that hospices around the country are required to follow,” said J. Donald Schumacher, president of the National Hospice and Palliative Care Organization (NHPCO).

Between 2000 and 2012 the number of Americans served by hospice more than doubled to 1.6 million, according to the NHPCO. The 5,500 hospice programs in the country most often see patients in their homes, but they may also provide care in nursing homes, hospice centers, and hospitals.

“Over the past few decades we’ve done a lot right with end-of-life care. We’ve expanded palliative care, we’ve expanded hospice, there’s been a lot more focus on it,” said Adam Singer, the lead author of the study in the Annals of Internal Medicine and an assistant policy analyst with the RAND Corporation. “But I also think that we’ve fallen short in key ways that may be contributing to the results we’re finding.”

In the United States it’s very hard for patients to get good end-of-life care because they are continually treated.
J. Donald Schumacher, National Hospice and Palliative Care Organization

Although this is a complicated issue, researchers already have a sense of the barriers that limit end-of-life care in the U.S.

“In the United States it’s very hard for patients to get good end-of-life care because they are continually treated,” said Schumacher. “They’re not given the level of pain and symptom management that they need, largely because the patient, family or the physician has a difficult time making those decisions.”

In many cases, intense treatments can be appropriate. But they can worsen your quality of life when the chance of a cure is low.

Also, focusing too much on treating a terminal patient’s illness may delay access to the same hospice programs that are designed to help manage their symptoms.

man in wheelchair

“The median hospice stay is still under three weeks,” said Singer. “Three weeks is great, but it’s often not enough time for hospice to really take hold, for it to really take effect on symptoms.”

In addition, access to palliative care is a problem for patients who are dying, a process that can take months to years.

Most palliative care services, which are aimed at providing relief from symptoms, are still offered inside hospitals. Terminally ill patients, however, are often in and out of the hospital during the last months of life.

“Even though palliative care services have expanded,” said Singer, “most of the course of a terminal illness doesn’t take place in a hospital where they would have access to those services.”

Read More: Depression in the Face of a Terminal Illness & Death »

Earlier End-of-Life Discussions Are Crucial

Improving end-of-life care in the U.S. is not an easy proposition. Americans tend to be hesitant to talk about dying and the issues that surround it.

In a recent study in JAMA Internal Medicine, researchers surveyed doctors, nurses, and medical residents in 13 university-based hospitals in Canada. These healthcare providers identified factors related to patients and their family as the main barriers to end-of-life discussions.

Some of these hurdles stem from disagreements among family members on which care options to choose for the patient. Or patients may be unable to make decisions on their own. But our inability to come to grips with dying is also related to the success of medicine in treating illness.

Patients and families go in and they expect there to be a cure.
Adam Singer, RAND Corporation

“There’s been so much progress in medicine, it’s so technologically advanced, that I think there’s more of a sense that doctors can just cure us,” said Singer. “Patients and families go in and they expect there to be a cure.”

The Institute of Medicine, in a report released in September 2014, focused on the reluctance of Americans and their doctors to talk about care at the end of life. Having these kinds of “advance care planning” discussions earlier, though, can head off more difficult decisions later on.

“When you’re trying to make a decision when somebody is in a medical crisis,” said Schumacher, “it can be very, very challenging.”

According to the Institute of Medicine guidelines, physicians and other healthcare professionals should guide end-of-life discussions with patients and their family. These conversations should respect the preferences of the patient, with the goal of relieving suffering and easing the burden of loved ones.

Other guidelines take a similar approach, such as those released last May by the University of California, Los Angeles (UCLA), and eight other healthcare organizations in Southern California.

We must help patients and their families through the process of negotiating difficult end-of-life decisions.
Dr. Neil Wenger, UCLA Health Ethics Center

“Academic medical centers such as UCLA’s often confront complex life-and-death questions,” said Dr. Neil Wenger, director of the UCLA Health Ethics Center and a professor in the division of general internal medicine and health services research at the David Geffen School of Medicine at UCLA, in a press release. “We must help patients and their families through the process of negotiating difficult end-of-life decisions.”

Patients are encouraged to plan in advance for their needs and wishes through living wills or other types of advance directive, such as power of attorney, which designates someone to make decisions on your behalf when you can no longer do so.

Making the shift to talking more openly about death, however, won’t be easy.

“We are a death-denying society,” said Schumacher, “So I think it is going to take quite a while for this change to take place.”

Overcoming resistance to talking about dying, and initiating these conversations earlier, could reduce some of the barriers to more compassionate end-of-life care in the U.S.

“What happens a lot of times, though, is the conversation doesn’t happen until almost the very end,” said Schumacher. “But you’re never too young to have the conversation with your family about what you want to have done for you when your time comes.”

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