Columns

This Senior Power column (#177) is mostly about hospice. In July 2010 my column (#20) was about Death Hospice Palliative; it is accessible via the Planet’s online archive. That was then. This is now.

Hospice is a care philosophy based on belief that every person with a life-limiting terminal illness, regardless of age, is entitled to be as free of pain and symptoms as long as possible.

Some folks, including “professionals,” assume that hospice provides assisted suicide. It is currently possible to obtain physician-assisted suicide, albeit not easily, in three states. Popular literature conveys two pictures of hospice-- an at-home service and a building/program elsewhere. It can be confusing. 

Hospice in the United States has grown from a volunteer-led, not for-profit movement to improve care for people dying alone, isolated or in hospitals, to a significant part of the health care system. Most hospice care is now delivered at home. Hospice care is also available to people in home-like hospice residences, nursing homes, assisted living facilities, veterans' facilities, hospitals, and prisons.  

People in hospice are less likely to die in a hospital or nursing home and less likely to get costly and intensive care than are terminally ill patients who don’t opt for hospice care, according to a new study of older Americans with cancer. Hospice patients endured fewer invasive procedures and fewer hospital stays at the end of their lives.  

Some services have always been available from visiting-nurse and home-care agencies, clergy, church-visitation committees, and other local sources. A hospice program can coordinate their services. Not all communities have hospice agencies. “Medicare & You 2015” is the official U.S. government Medicare handbook. Hospice is a Part A-covered service. “Covered” is a misnomer in this context, however. Hospice care is described on page 37. It reads, in part, “To quality for hospice care, a hospice doctor and your doctor (if you have one) must certify that you’re terminally ill, meaning you have a life expectancy of 6 months or less. If you’re already getting hospice care, a hospice doctor or nurse practitioner will need to see you about 6 months after your hospice care started to certify that you’re still terminally ill. … A Medicare-approved hospice usually gives [sic] hospice care in your home or other facility where you live, like a nursing home…” Medicare began covering hospice in 1983 and now pays the bills of 87% of patients in hospice care. It has transformed a grassroots cause into an industry. 

There are several types of hospice. Smith and Himmel identify: concierge, faith-based, home care, for-profit, green hospice, nonprofit, pediatric, in prisons, and even pet hospice. “There’s a quiet revolution happening in the way we die. Almost half of all Americans now die in hospice care, often at home, and a vast industry has sprung up to meet the growing demand. …hospice has become a $14-billion a year business and arguably the most successful segment of health care in America.”  

For patients receiving institutionalized medical care, the federal Patient Self-Determination Act (PSDA) requires that hospitals give registering patients information regarding their right to accept or decline any kind of medical treatment, including life support. (I received no such information the last time I registered at a local hospital.) A patient can elect to wear a band which directs staff not to resuscitate. “DNR” should appear in her chart; presumably he would be a patient in a secular hospital.  

Information about the National Hospice and Palliative Care Organization, the National Association for Home Care and Hospice, the Hospice Association of America and other organizations is accessible by Internet.  

“Death hath so many doors to let out life.” Beaumont & Fletcher.  

Hospice services and palliative care programs share similar goals of providing symptom relief and pain management. Non-hospice palliative care is appropriate for anyone with a serious, complex illness. In the United States, a distinction is made between general palliative care and hospice care that delivers palliative care to those at the end of life; the two aspects of care share a similar philosophy but differ in their payment systems and location of services. 

Palliative care is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. The term generally refers to any care that alleviates symptoms, whether or not there is hope of a cure by other means. Palliative treatments may also be used to alleviate the side effects of curative treatments, such as nausea associated with chemotherapy. 

The role of the palliative care physician at the University of Washington Medical Center, Seattle, is to comfort patients instead of cure them, to help them cope with their illnesses rather than to treat them. When a patient is in intensive care, the palliative care doctor stands beside the patient’s husband and children as the family prays for recovery. They talk extensively about what the family wanted to do if the patient took a turn for the worse. Personally, I am offended by these assumptions that every patient has a family and that prayer is part of their lives. 

When states are ranked by the percentage of hospitals providing palliative care, California is not among the top ten. Hospitals around the country are increasingly starting palliative care programs, designed to relieve seriously ill patients’ pain, stress and symptoms regardless of how long they have to live. While some patients are close to death, others are still receiving treatment to extend their days. And as they do, ‘tis said that the palliative care team, including doctors, social workers, nurses and chaplains, tries to improve their quality of life and help patients with things not always addressed by medical doctors. They help manage symptoms such as nausea, difficulty sleeping and fatigue, and they coordinate with the doctors providing treatment.  

More than two-thirds of hospitals with more than 50 beds offer palliative care, up from 25% in 2000, according to the Center to Advance Palliative Care at Mount Sinai School of Medicine The field is recognized as a sub-specialty, and there are fellowships, journals and research centers devoted to the topic. The increase in popularity is in part due to the growing number of people with chronic illness who may not be ready for hospice. Medicare pays for hospice benefits only if patients have six months or less to live and agree to forgo treatment that prolongs life. But some doctors are resistant to palliative care because they believe it pushes patients away from medical treatment that could help them fight their illnesses. Even the idea of patients planning ahead and making decisions about their care has caused controversy. 

A provision that would have paid doctors for having discussions about living wills with their patients was taken out of the Affordable Care Act after conservatives raised concerns over “death panels.” 

“Death is not the worst evil, but rather when we wish to die and cannot,” Sophocles (c. 496 B.C.–406 B.C.) 

Although the concept of palliative care is not new, most physicians have traditionally concentrated on trying to cure patients. They view treatments for the alleviation of symptoms as hazardous and inviting addiction and other unwanted side effects. 

There can be a relationship between assisted suicide and hospice. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes, but also care provided to those who want to die in their own homes. It began to emerge in the 17th century, but many of the foundational principles by which modern hospice services operate were pioneered in the 1950s by Dame Cicely Saunders. Although the movement has met with some resistance, hospice has rapidly expanded throughout the United Kingdom and the United States.  

The October 19, 2014 60 Minutes TV program featured a segment about Barbara Mancini. Her father was receiving at home hospice care. The hospice nurse contacted the police, leading to Mancini’s arrest. Barbara Mancini went from being a daughter and a registered nurse to being an advocate for death-with-dignity legislation. With Compassion & Choices' help, she got the unjust charge of "assisted suicide" dismissed.  

Suicide tourism is associated with the pro-euthanasia movement which organizes trips for potential suicide candidates in the few places where euthanasia is tolerated, encouraging decriminalization of the practice in many parts of the world. It is important because it shows clearly that hospice, whether in one’s home or a separate facility, usually does not suffice for the patient with an incurable deteriorating illness and or extreme pain. This is well demonstrated in PBS remarkable Frontline series’ “Suicide Tourist” aired in March 2010.  

The booming industry  

The hospice industry has evolved from a movement of nonprofit organizations into a significant piece of the health-care industry that gets most of its revenue from Medicare. 

Beginning in May 2014, the Washington Post published The Business of Dying, a series about hospice. Peter Whoriskey is a staff writer for the Washington Post newspaper, handling investigations of financial and economic topics. Go to your Internet and read this reportage. (Note: The Business of Dying is also the title of a 2002 British novel by Simon Kernick.)  

Under new legislation addressing concerns about substandard operators in this booming industry, hospice agencies must subject themselves to government inspection at least once every three years. The bill requires closer scrutiny of hospices at which a large percentage of patients live longer than six months, a sign that a hospice may be intentionally enrolling people who are more profitable than patients closer to death. But Medicare statistics analyzed by the Washington Post indicate that hospices may be stinting on patient care in order to pad profits, e.g. 18% did not provide a single patient with “crisis care” during 2012. The legislation addresses two problems in the industry: (1) Infrequency of inspections, allowing substandard operators to stay in business; inspections have been held about once every 6+ years. (2) Hospices that appear to be enrolling patients even though they are not near death, patients generally easier to care for and are more profitable.  

Hospice and Latinos and Latinas 

The Center for Public Affairs Research has released results of a survey about Hispanics' experiences with long-term care in the United States. Hispanics are more likely than non-Hispanics to foresee needing long-term care. They report feeling less prepared for that care, more concerned about the financial consequences.  

A recommendation for hospice can be scary and overwhelming, say end-of-life experts. Lack of information has led many people to think of hospice as a place where people go to die, which leads to patients not receiving the end-of-life care and services they deserve. It is a problem acute among Latinos who, according to a 2012 California State Hospice Data Report, are less likely than other ethnic groups to discuss end of life issues. Only 4 % of terminally ill Latinos over age 65 die while under hospice care. A 2011 California HealthCare Foundation study on attitudes and experiences related to death and dying reported that 42% percent of California residents surveyed said they had discussed end of life wishes with their loved ones, while only 31% of Latinos surveyed had done so.

Daniel Lugo III was 44-years-old when he was diagnosed in 2011 with stage-four stomach cancer. His doctors gave him a year or two to live and prescribed an aggressive regime of chemotherapy, b by 2014 the cancer had spread to his brain and lungs. His weight loss was dramatic, and an esophageal stent implanted to improve his breathing and swallowing seemed to make him weaker. Then he had a seizure. The East Los Angeles family knew it was time for the husband and father of two to go into hospice, the next stage of his palliative care.  

Daniel Lugo wanted to know everything and to make sure his family was prepared for whatever would come, including his death. The doctor explained that hospice care is recommended when there is nothing more doctors can do medically to cure a patient. He said the focus of his care would turn to ensuring Lugo was comfortable, and that a team of nurses, doctors, social workers and health aides would be on call 24-hours a day to help manage his pain and other needs. Daniel Lugo prepared for his death by setting up a living will, ensuring his pension would help support his family, and buying his gravesite. 

USC Gerontology Professor Susan Enguidanos says misconceptions and lack of knowledge are barriers when it comes to getting people to consider hospice. “For Latinos, access is also hampered by citizenship and eligibility for Medicare or Medicaid.” Most hospice patients have six months or less to live, but they could live longer or die sooner. Daniel Lugo died on April 17, 2014, three weeks after entering hospice. He was 47.  

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LOCAL NEWS 

The mission of Berkeley’s Commission on Aging is to “enhance the quality of life for people 55 years and older in the Berkeley Community, to increase public awareness of their contributions and needs by actively promoting their health, safety, independence and participation in our community.” 

The November 2014 Nugget issue carried a back-page announcement of a Berkeley COA Special Meeting (November 9, at the South branch Public Library): Aging in a Changing Berkeley: How can we prepare to support healthy and engaged aging? “The Commission on Aging is seeking broad community input on issues of health, safety, housing, transportation, communication, economic opportunity, ongoing education and community involvement.” 

The Commission’s website declared that the COA seeks to focus on the effects of these issues on our rapidly growing older population. The Commission was requesting public comment to address these questions: 

a. How can we prepare to support healthy engaged aging in a changing Berkeley? 

b. How can the City government and citizens work together to help promote the vibrancy and health of our elder community? 

c. What is Berkeley doing right? 

d. Where is there room for improvements? 

e. What new possibilities are on the horizon? 

Perhaps you were unaware of this special meeting or unable to attend or have lost confidence in Berkeley’s boards and commissions. If you would nevertheless like to share your thoughts and ideas on these questions, email them to Senior Power, with permission to print! The next COA regular meeting won’t be until Wednesday, January 7, 2015. I understand that at least 4 speaker cards expressed concern about housing problems. Health and transportation are also big areas. Death and dying and end-of- life concerns like hospice deserve consideration.  

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CALIFORNIA NEWS 

There are 4.27 million Californians age 65+. By 2020, there will be 6.05 million. Caring for old and infirm people is a growth industry, especially in California, which has one of the highest percentages of for-profit nursing homes among the states. 

California has more than its share of laws governing its 1,260 nursing homes and 1,400 other facilities that provide care for 300,000 individuals.  

People who enforce the rules fail on the most basic level – helping people understand which chains operate safe and humane facilities, and which are unacceptable. Regulators do not seem to know who owns many nursing homes, or if they do, they fail to make it easy for people to find well-run facilities. 

The Sacramento Bee newspaper’s Lundstrom and Reese spent months poring over public information to construct a database showing nursing home ownership. Nine of California’s 10 largest chains fell below state averages in staffing measures such as turnover in 2012, the last year for which data are complete. Too many profit-seeking operators cut costs, and vulnerable people suffer. 

Nursing homes inspectors are overworked, as a recent California State Auditor report suggests. The Department of Public Health had 10,000 open complaints against various facilities. 

The citation system needs help. Inspectors traditionally homed in on specific facilities. They should focus on problem chains and frequently inspect chains that have a history of violations. 

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I referred at the top to the possibility of confusion around “hospice.” Reviewers and reporters refer variously to the ambience of HBO’s Getting On as a nursing home, geriatric ward, extended care unit, and geriatric extended care wing of a down-at-the-heels hospital. Season two finds Dr. James on a research binge while promoting the ward’s hospice program to bring in extra cash. 

At the Billy Barnes (a fun title-choice) Extended Care Unit of Mt. Palms Hospital in Long Beach, California, the staff attends to the needs of female patients who are often “getting on” in years, while dealing with the challenges of a health-care bureaucracy in need of overhaul. The ward's patients constitute a collection of fascinating older women who populate the background of every scene. YouTube provides a clip. 

Getting On was developed for U.S. television from the British comedy of the same name. Fifty-nine year old actor Laurie Metcalf plays Doctor Jenna James, director of medicine at the fictional extended care unit, which means geriatric ward, which means... The original series aired in Britain between 2009 and 2012. HBO's U.S. adaptation is scheduled for 6 episodes this season; it premiered on November 9.