What does having a lawyer mean to a person at the end of his or her life? As SeniorLAW Center celebrates 30 years of service to Pennsylvania’s low-income seniors, we are increasingly sensitive to the needs of the aging population and ways to serve older adults. Thanks to the generous support of the Independence Foundation, SeniorLAW Center has launched a project focused solely on providing legal assistance to low-income elders at the end of life: the Hospice Legal Project. The first of its kind in the nation, the project is a unique medicallegal partnership between SeniorLAW Center, Penn Home Care and Hospice Services and Dr. David Casarett, a nationally renowned expert on end-of-life care.
I have the privilege of serving as the fellow who coordinates this project, an issue of enduring interest after four years of postgraduate research in this arena. As a research coordinator for Casarett of the University of Pennsylvania, I assisted with clinical studies focused on end-of-life, decision-making capacity and hospice. I interviewed hundreds of elderly patients and frequently asked questions about living with terminal illness.
Family member interviews often followed, which enabled us to understand their experiences as caregivers and bereaved family members. The stories I heard during these interviews, some uplifting and others tragic, were far more compelling than the statistics the studies generated. An interest in the law, combined with my research experiences, led to the creation of and support for this project.
Using an assessment tool we developed, referrals are made to SeniorLAW by members of the hospice’s social services team.
Given the time sensitivity of these cases, the legal problems are addressed quickly by a SeniorLAW Center attorney. A series of trainings, presentations and informal meetings with the hospice’s staff about legal issues and how attorneys can assist in improving the quality of life for the dying has strengthened the partnership with the hospice.
Ms. Bradford (not her real name) was referred to the Hospice Legal Project because she needed a will and financial and health care powers of attorney. She was becoming increasingly weak as a result of congestive heart failure caused by chronic high blood pressure. Labored breathing and use of an oxygen machine made it difficult for her to communicate, which frustrated the 64-yearold woman. I prepared the documents and brought them to her home.
During the visit, Ms. Bradford received a phone call. She said she hated to answer the phone because it was always creditors harassing her about a single credit card debt of $610.26. She felt helpless because she had little money, living on $603 per month, and she had been sending them what little she could every month. Ms. Bradford lived alone and had minimal external support. As a divorcee, she was not able to demonstrate that she was entitled to her ex-husband’s much greater Social Security payment, which required a copy of the divorce decree she could not afford, and, being homebound, she had difficulty self-advocating. We started with the credit debt, and her hospice social worker focused on obtaining her divorce decree.
I determined that Ms. Bradford had not been sued for this debt or any others and sent a “cease contact” letter to the creditor to terminate the harassing phone calls. If Ms. Bradford had not been referred by her hospice social worker, her quiet suffering would have gone unrecognized and unresolved. Formal recognition of the needs of the dying is relatively recent in our nation’s history.
The first hospice in the United States was created in 1974 in New Haven, Conn., and it provided the hospice model used today. This model is a package of services for the terminally ill and their families, which includes doctors, nurses, social workers, spiritual support, home health assistance and bereavement support. The focus of the care is comfort rather than cure. By 2006, the hospice movement had grown to encompass 4,500 hospice providers in the U.S. with approximately 36 percent of all U.S. deaths occurring under the care of a hospice program.
It is estimated that 1.3 million patients received hospice services in 2006. This is a 162 percent increase in just 10 years. Eighty percent of those on hospice are over the age of 65, according to information published in the National Hospice and Palliative Care Organization’s “NHPCO Facts and Figures: Hospice Care in America.” What can the legal community learn from the successes of the hospice movement? First and foremost it is important for legal providers to recognize that the terminally ill have legal rights until the day they die. It is a travesty to ignore the legal concerns of the dying based on the belief that their issues will soon be moot; it does not permit a dignified death. In the U.S. Supreme Court’s landmark decision Cruzan v. Director, the court recognized an incompetent person’s liberty interest to refuse unwanted medical care. Cruzan was an impetus to creating more advance directive legislation recognizing these rights, and while some states had advance directive for health care legislation as early as 1976, Pennsylvania did not enact such legislation until 1992. Recently, the commonwealth improved upon its original legislation when it enacted 2006′s Act 169, 20 Pa. C.S. Section 5421 et seq., which among other improvements, legally sanctioned health care representatives, or persons eligible to make decisions for those with no formal surrogate.
Although these legal advancements are remarkable, death and dying is still largely considered a medical issue, which neglects the many needs of the dying that are legal in nature. The hospice movement demonstrates that a totality of care, including medical, social and spiritual, fosters death with dignity, and there is a need for the legal community to be part of this model.
An important goal of the Hospice Legal Project is to address the suffering caused by unresolved personal affairs at the end of life beyond advance directives. The legal issues vary, but often include simple estate planning, (e.g., Do I really need a will?); advice regarding Medicaid Estate Recovery, the Pennsylvania Department of Public Welfare’s process of recouping Medicaid payments from the recipient’s estate, (e.g., If my name is not on my deed, will my wife still get my house?); questions regarding debts, (e.g., Will my daughter be responsible for my credit card debt when I die?); and title issues, bankruptcy, and utilities, (e.g., My gas is going to be shut off, can I qualify for a medical postponement, and is there anything else that can be done?) Many of these concerns can be settled with timely advocacy. Legal issues that are not identified and resolved can weaken quality of life at its end, and further disrupt a family’s structure, resulting in complicated bereavement after a person’s death.
A comment from a hospice social worker says it all: Because of the legal assistance SeniorLAW Center provided, her hospice patient was finally at peace and could give herself permission to die.
SeniorLAW Center is proud to have launched this groundbreaking project as it celebrates its 30th year of protecting the legal rights of Pennsylvania seniors. The Hospice Legal Project and SeniorLAW Center’s many other programs of legal representation, education, information and advocacy serve more than 10,000 older Pennsylvanians each year. All of our services continue to be free. Pennsylvania’s older population is enormous, today constituting more than 2,400,000 Pennsylvanians. By the year 2020, one in every four Pennsylvanians will be 60 years of age or older. Older Pennsylvanians need and deserve access to legal services, which can dramatically affect their safety, economic security, health care, quality of life and end of life. We are privileged to serve them.
For more information about SeniorLAW Center, or to volunteer, contribute or get critical information for the seniors in your life, visit www.seniorlawcenter.org. •
ROXANE CROWLEY
is a public interest law fellow at the SeniorLAW Center Independence Foundation.
