For years, I’ve been writing about caring for your loved ones who are at nursing homes. However, my “expertise” has been primarily built upon second-hand knowledge, i.e., from experiences of my clients and from long-term care advocates I hear at legal seminars and symposiums.
That is, until recently, when my father-in-law spent some time in a nursing home after major life-saving surgery. I was able to use my knowledge of the law to make sure that he got the best of care. But I also learned some things about how the “system” works that I didn’t know before. I’d like to share some things that I learned in this and future Rafu Shimpo articles.
First, the care planning conference. Under the law, a nursing home resident has the right to receive good care. But in order to provide “good care,” the nursing home staff must work with you (and your family) to develop an individualized, written care plan that supports your needs, abilities, interests and preferences.
The staff members need to get a “whole picture” of who you are. Otherwise, it is likely that your needs will go unmet and your preferences unnoticed. Knowledge about who you are helps build respect and understanding — two critical ingredients of dignified care. Assessments must be done within seven days of admission.
I knew that the family had the right to be involved in that meeting. What I didn’t know was that the family has to request to be involved. After hours of visiting over the course of several weeks, it was quite apparent that every staff member was busy. Gathering six or seven of the department heads to all be available at the same time must have been quite a chore.
My “hunch” is that if a family doesn’t request to be involved, that care planning conference happens without them. If you and key family members get involved in the care planning process, it is almost certain that you will get better care and enjoy a higher quality of life.
A good care conference takes time, sometimes an hour or more. During the meeting, the staff should explain care options and ask you about your needs and preferences. Don’t be afraid to speak up. Discuss your goals, such as plans for discharge or hopes of improved health and independence. You have the right to give information, ask questions and offer suggestions. Last but not least, ask for a copy of the written care plan.
Secondly, after receiving three weeks of physical therapy at the nursing home, my father-in-law wanted to know when he would be able to go home. However, he was told by the physical therapists and other care staff that in order for him to go home, the doctor must sign an order to discharge. This frustrated him because we never saw nor got to speak with the doctor.
I walked into the assistant administrator’s office to express the family’s concerns about the lack of doctor visits. He responded, “Around nursing homes, doctors are invisible.” He went on, “If the family wants him to go home, we’ll make sure the doctor signs the order.” Sure enough, when the family arranged for certain medical equipment to be ordered, the doctor signed the discharge papers — we still never saw the doctor.
Now, the case manager at the nursing home told us that the doctor had signed an order to authorize Medicare to pay for physical therapy at home three days a week. What I didn’t know was that this same doctor, the one we never saw, authorized a certain home care agency to provide the care at home.
Here’s what I wanted to share — we didn’t have to use the home health care agency that the doctor ordered. We could choose our own, as long as the home health care agency was a licensed Medicare provider. In other words, why should we use a home health care agency we didn’t know, recommended by a doctor we never saw?
This brings me back full circle to my last article, “What Is Hospice Care?” (Saturday, May 30, 2015). It never even occurred to me that this could happen, but several doctors have been jailed because they received illegal kickbacks from a hospice provider in exchange for referring Medicare and Medicaid patients.
Believe it or not, “dying” has become a big business. What began as a movement to improve the end-of-life experience has become more of a commercial enterprise. In 2000, only 30 percent of hospices were run by for-profit companies. By 2012, the proportion of for-profit companies had nearly doubled, to 60 percent, according to Medicare figures. (Source: The Washington Post, 8/6/14)
According to another article entitled “The Business of Dying” (The Huffington Post, 6/19/14), the reason for this expansion partially reflects a shift in attitude among terminally ill patients, who increasingly prefer to spend their final weeks at home instead of in a hospital. But the explosive growth of hospice is also attributable to the fact that dying patients in nursing homes are an increasingly lucrative source of business for hospice companies.
There has been an all-out marketing blitz by hospice companies eager to keep patient counts high. “The pressure was direct from operations on a daily basis,” said James Robbins, a former sales manager at AseraCare Hospice, a chain operating in 19 states. “It’s not even about patient care anymore; they’ve gone to the dark side. It’s all about money.”
At hundreds of U.S. hospices, it is normal for a hospice to release a small portion of patients before death — about 15 percent has been typical, often because a patient’s health unexpectedly improves. But researchers found that at some hospices, and particularly at new, for-profit companies, the rate of patients leaving hospice care alive is double that level or more.
New research shows that more than one in three patients are dropping the service before dying. When that many patients are leaving a hospice alive, experts said, the agencies are likely to be either driving them away with inadequate care or enrolling patients who aren’t really dying in order to pad their profits.
The federal government in recent years has sought to recover more than $1 billion from hospices that, according to attorneys, illegally billed Medicare for patients who weren’t near death. While the federal government has filed numerous lawsuits to recover the money spent on hospice patients who weren’t dying, the harm is not just financial.
Hospice care often exposes patients to different, more powerful drugs, including morphine and other potent painkillers. In some cases, those medications led to the death of patients who were not otherwise dying, families say. “My mother was not dying, just old and in a lot of pain,” said Shalynn Womack, a writer in Tennessee whose mother entered a hospice with the diagnosis of “failure to thrive.”
After receiving what Womack called a “toxic cocktail” of drugs, her mother passed away. Womack has since testified to a Tennessee legislative committee about what she considers to be the dangers of enrolling patients who aren’t dying in hospice. “Putting her in hospice was putting her in harm’s way,” she said.
Bottom line — if you or your loved one is referred to hospice care, or even a home health care agency, you’re not necessarily stuck with the one the doctor referred. Do your homework and find the best hospice or home health care agency that will be the best fit for you and your family.
Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.