Testimony before the

Subcommittee on the Constitution

Committee on the Judiciary

U.S. House of Representatives

June 24, 1999

by

Samira K. Beckwith, CHE, LCSW

President and CEO

Hope Hospice and Palliative Care

9470 HealthPark Circle

Fort Myers, FL 33908

(941) 489-9140

My name is Samira K. Beckwith and I am President and CEO of Hope Hospice and Palliative Care in Fort Myers, Florida. I am here today representing my organization, and in my role as a loaned executive to the National Hospice Organization, and their Public Policy Committee. I appreciate the opportunity to testify in support of the Pain Relief Promotion Act of 1999.

Over the past 20 years, I have had both personal and professional opportunities to care for people during their final stage of life.

My interest in how people live and are cared for during this time began when I was in my 20's and being treated for Hodgkin's disease. It was my own personal experience and observation that there needed to be a better way to care for people with serious illnesses and for those at the end of life.

Death, like birth is a natural part of the life cycle. There are similarities and obvious differences. The end of life is usually not surrounded with the same sense of joy that encompasses the beginning of life, but both are more than just medical or physical events. Both require preparation, education, and support as well as special attention to the needs of the family. Birthing has become an intimate family time that is a celebration of life. As a nation, we must be sure that each person has the same loving care, support and specialized skills needed at the end of life as they do at the beginning.

Hospices developed in response to these needs as a program of care that provides the specialized skills and services that people need to meet the complex physical, psychosocial, spiritual, emotional and practical issues that confront a patient and family at the end of life. The goal of hospice care is to assist the patient in living each day as fully as possible, with their pain and symptoms managed, as well as to help the family cope with their grief and loss.

In 1982, Congress provided for the Medicare Hospice Benefit in the Tax Equity and Fiscal Responsibility Act. This was a bold and positive move to meet the needs of our nation's most vulnerable population, the terminally ill.

Last year, over 20% of the people who died in America were cared for by the nations' hospices. Over 540,000 people of all ages, with various end stage diseases had the positive benefit of hospice care.

Through hospice, the health care community never has to say to a person, "There is nothing more we can do for you." The choices at the end of life should not be between living in pain or suicide. With hospice, the focus of care shifts from cure to comfort and although we cannot extend a person's life, we can enhance the quality.

Even with all the progress we have made in end-of-life care, too many Americans still die alone or in pain, often enduring costly and ineffective treatments and being referred to hospice very late or not at all.

The crisis that exists for many people at the end of life has been documented by numerous groups including the Medicare Payment Advisory Commission. According to the commission, "the gap between the care now given to dying beneficiaries and ideal care is wider than in probably any other area of medicine. Closing this gap should be one of the highest priorities of the Medicare program. There has been too little thought (given) to how to care for chronically ill individuals and even less about how to provide care when people have reached a terminal point in their life."

There are many reasons for this ongoing crisis. Dealing with the final stage of life is difficult. Difficult for health care providers because their goal is to cure and far too often they have not received the necessary training in palliative care. It is also difficult for them to predict a prognosis with the certainty that is required by misplaced regulatory efforts.

Dying continues to be one of the most difficult topics to discuss. Most people fear the end of life and associate it with pain, suffering, a loss of control, and being a burden on their family. In fact, a recent survey conducted by the National Hospice Foundation found that more than one out of every four American adults are not likely to discuss issues related to their parent's death with their parent even if the parent were terminally ill and had less than six months to live. Americans are more likely to talk to their children about such sensitive topics as drugs and sex. Additionally, fewer than 25% of Americans have thought about how they would like to be cared for at the end of life and put their thoughts in writing.

Since 1982, when the Medicare Hospice Benefit was enacted, there have been great advances in the methods and medications available to provide pain management and symptom control. However, this information has not been widely accepted outside of the hospice community.

"The Pain Relief Promotion Act of 1999" affirms the appropriate use of controlled substances to alleviate pain and symptoms. The bill also provides for education of health care professionals and research that will increase the competencies of those providing care. Another important aspect of this bill is that it recognizes that palliative care includes more than treatment of pain and symptoms, that it also includes the "enhancement of quality of life."

This increased awareness will help to break down the barriers that keep people from being able to access hospice care. It will also facilitate earlier referrals to hospice. Patients are too often referred at the brink of death. Currently, over half of our patients are admitted to hospice within 3 weeks of their death. Many of these patients have suffered needlessly and the most common question we hear from the families is "Why?" The son of a man who was cared for by our hospice for only 5 hours talked with me about the relief that he and his family experienced once their father was under hospice care. Even with such a short length of stay he was able to see the difference in his father's care.

An additional barrier to people receiving adequate pain management is that of cost. The reimbursement mechanism for hospice has not been reviewed since it was first enacted in 1982 and needs to be updated to account for the real costs associated with compassionate and modern approaches to care for the dying. A recent example in our hospice is a woman who needed 800 mg of an oral pain medication every 12 hours. The cost for this one medication was $95 per day and our total reimbursement rate is only $93 per day. This per diem reimbursement needs to cover all care and services including all

Physician's services, nursing care, counseling, spiritual support, medical appliances, drugs, home health aides, homemaker services, physical and occupational therapies, dietary advice and volunteer assistance.

A teacher was curled in a fetal position when the nurse and social worker went to his home to admit him to hospice service. He talked about his pain and asked for help to end his life. Within hours, his pain was controlled. He spent his final months visiting with friends and family. Good pain control is not difficult. What is difficult is to correct the misunderstandings that exist and make it available to those in need.

During a recent conversation, a woman talked with me about her mother who lives in our community. Her mother wanted a stash of pills to keep "just in case." She feared the agony she anticipated having to suffer in the final stage of her Parkinson's. After visiting our Hospice House, she told her daughter that she would not need the "stash" after all. She felt safe knowing that she would have the care she needed when her time came.

We, in hospice, have hundreds of thousands of stories about making people's final days warm and memorable. Helping a couple to celebrate their anniversary; allowing a terminally ill wife and husband to live together until their deaths, which occurred within days of each other; a woman who wanted to see her granddaughter born before she died was able to see her in an ultrasound picture; a young mother who was able to write letters for her children to read as they grew up - these are just a few of those stories.

We can not make the end of life an easy time but we can make it less difficult for people as they take their final journey down the road of life. Hospices can easily and competently care for many more people in need of good end-of-life care.

Thank you.