Living Trusts are an important service for us, and because many of our Trust clients are either retired or thinking about retiring, conversations about healthcare, assisted living and long-term care frequently surface. Hospice is another topic that gets a lot of attention. It’s an industry that has exploded over the last few years as healthcare providers strives to provide services for an aging baby-boomer population.
A recent article in The New York Times, This Was Not the Good Death We Were Promised, is a very moving story about one woman’s hospice experience with her father, who was diagnosed with pancreatic cancer, which is notoriously difficult to treat. They had decided that he would die at home, surrounded by his family and those things which were familiar and dear to him. The author spent the final weeks with her father, watching favorite TV episodes, poring over old photos and reminiscing.
A family enlisted the support of hospice to help their father die
There was little she could offer her father at this point in his life, but what she could promise him was a painless, easy death. They were wary of the unnecessary medicalization of hospital deaths, so they had enlisted the support of an in-home hospice agency to ease him through his final days.
When a doctor determined that her 83-year old father had about six months to live, the author invited a hospice representative to their home. The representative provided a summary of the Medicare-provided services. Most importantly, she told them that if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.
Looking back, the problem centered around inadequate staffing levels
Things went well for a few months. A caretaker made regular visits and a physician’s assistant prescribed pain medication for the relatively little pain he was having. But towards the end, her father experienced a deterioration—and hospice failed to respond as promised.
At 7:00pm on the last day of her father’s life, his pain spiked dramatically. His nurse turned her phone off at 5:00pm, so the author called the hospice switchboard. No doctor was available, and it took the receptionist an hour to reach a nurse by phone, who told them to double his dose of oxycodone. Yet that had no effect; her father needed another level of care.
The only on-call nurse was helping another family two hours away. The author and her sister experimented with Ativan and more oxycodone and fumbled through administering a dose of morphine their mother found in a cabinet. A nurse arrived at midnight, and, incredibly, had brought no painkillers.
After the nurse left, the father’s pain broke through the morphine
The author called the switchboard again, and it took three hours for a new nurse to arrive. She was surprised the patient hadn’t been set up with a pump for a more effective painkiller. This nurse agreed that they were now in a crisis that should trigger the promised round-the-clock care. She made a phone call and told the family that the crisis nurse would arrive by 8 a.m. But the crisis nurse did not arrive by 8:00, 9:00 or 10:00am. Apparently the nurse had strep throat, but another nurse would arrive by noon. By 2:00pm, no nurse had arrived. By this time, the father had slipped into a coma, leaving his family heartbroken that he had been in severe pain and would not be able to hear their final goodbyes. The crisis nurse finally arrived at 4 p.m., but there was little left to do.
At the end of life, things can fall apart quickly
Neither a medical specialist nor a hospice worker can guarantee a painless exit. But this family was assured that a palliative expert would be at their father’s bedside if he needed it. No one mentioned the strain on their staffing levels that would make this impossible.
The author saw in a report several months later that the home hospice system is stretched thin and falling short of its original mission. Many of the more than 4,000 Medicare-certified hospice agencies in the U.S. exist within larger healthcare or corporate systems, which are often under pressure to keep profit margins up. Hospice began as a nonprofit, with pure motives. With the large, aging baby-boomer population and the profit potential, many more for-profit hospice organizations have sprung up.
Hospice complaints are in the minority
Kaiser Health News discovered that there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80% of people reported “getting timely care” from hospice providers, and only 75% reported “getting help for symptoms.” That said, more than a million Medicare patients go into hospice care every year, and those with complaints are in the minority. A new government-sponsored website called Hospice Compare will soon include agency ratings, which may inspire some to raise their level of service. When the author looked up the agency they had used, its customer-satisfaction rate for handling pain — based on the company’s self-assessment — was 56%.
Just as this family had an unfortunate hospice experience, many other people can tell stories of the wonderful care their family members received from hospice providers. Thoroughly researching the background of a hospice agency before engaging it may help ensure that your loved ones receive excellent care.
