Removing the Barriers to End-of-Life Care

Thursday, March 21, 2002

Guest Speakers Bring Fresh Perspective to End of Life Care Issues

Presenters:  Barbara Spring, Director-Community Engagement--Missoula Demonstration Project, Missoula, MT; James Dube, PhD--Pharmacology--Nebraska Health System, Omaha, NE; Jos Welie, MMEDS, JD, PhD--Center for Health Policy and Ethics--Creighton University, Omaha, NE; Sr. Rita Carr, OP, M. MA, Staff Chaplain, Good Samaritan Health Systems, Kearney, NE; Joyce Donlan, MS in Early Childhood & Child Development. By Operations Board Member Ginny Wright

LINCOLN, Neb. — Around 120 people, including social workers, faith leaders, physicians, hospice workers, nurses, family members, even a school counselor, took part in the recent Nebraska Coalition for Compassionate Care (NCCC) biennial Conference, held March 21.

"I gained a lot of ideas to promote communication in my community," said one participant. "Realizing the caring and expertise of people in our state meant the most to me," said another. "The conference gave me the energy and enthusiasm to keep on ‘keeping on’ in my life and my work," were among comments shared by attendees.

Much of that enthusiasm was generated by the guest speakers, including Barbara Spring, the Community Engagement Director at the Missoula (Montana) Demonstration Project.

She shared compelling information regarding end-of-life care gathered from the surveys completed with different constituencies in Missoula, such as attorneys, legal assistants, occupational therapists, pharmacists, EMTs and physicians.

"The insight gained from these surveys helped us develop strategies to address this issue," said Spring, who encouraged participants to create community dialogue by asking questions like: How do Nebras-kans view death? How do people experience their medical and social care? How do people prepare for dying in your town or city? How do people in your area care for and support one another, clinically and socially, during dying and grief? The survey results were also used to identify focus areas, where to find funding or partners.

In the closing session, Spring selected participants from different communities in the central part of the state who had not worked together before. With them, she demonstrated how strangers (diversity) can communicate, generate ideas, and develop some viable strategies for addressing issues they found important. "It’s essential that diversity is allowed and that all parts of a community are somehow engaged in order to get the best information, the ideas that will work, and the change that is needed," explained Spring.

Dr. James Dubé from Purdue-Pharma, LLC is renowned for his understanding of pain and down-to-earth approach to serving people with pain. He firmly stated to conference attendees that properly managed pain treatment is not an addiction, nor is it addictive. "There are no excuses for failing to manage pain in this day and age, " said Dubé.

He disagreed with his co-panel member, Joyce Donlan, when she said her son became an addict in order to deal with the gap in medications because of difficulties getting adequate prescriptions.  Her son's physician believed he was "misusing" pain medication.  Dr. Dubé was clearly saddened that a mother believed her son was an addict, when it was his medical care that was inappropriate and his suffering could have been prevented.

Purdue-Pharma provided a booklet to all participants, Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain (fourth edition) by the American Pain Society. It provides up to date, scientific information and attitudes about pain and its treatment. Among the issues addressed:

• Give infants and children adequate opioid doses. This goes against some beliefs about youngster’s pain experience and unfounded fears about addiction. Dr. Dubé identified the fears, presumptions, and disproved ideas that some hold regarding the treatment of pain in general and infant/childhood pain. Providers and practitioners need to ask themselves why they are prescribing as they are and compare it with the current protocols for pain management.

• Follow patients closely, particularly when beginning or changing analgesic regimens.

• When changing to a new opioid or a different route, first use the equianalgesic doses to estimate the new dose. Then, modify the estimate based on the clinical situation and the specific drugs.

• Recognize and treat side effects.

• Do not use placebos to assess the nature of pain.

• Informed consent and patient decision making competence;
• Knowing the difference between euthanasia and foreseen but unintended shortening of a patient’s life through pain medications;
• Knowing the difference between physician assisted suicide and forgoing care that’s refused by a competent patient.

• Being familiar with the scope of a patient’s right to refuse life-sustaining treatment;
• The legal risk when administering potentially life-shortening medications to terminally ill patients
• Procedural nature of law (as compared with health care).

Sister Rita Carr, Staff Chaplain at Good Samaritan Hospital, in Kearney, Nebraska, gave an enlightening and personal discussion of issues related to dying. A major issue is what some might call the conspiracy of silence rather than frank, honest, open discussion about feelings, diagnoses, prognosis, and options.

"Sometimes people feel like they are ‘sparing’ the dying person grief, when in fact, it’s frustrating and confusing for a person to intuitively know (or factually know) they are dying, yet people won’t talk about it," said Sr. Carr.

"For people who have a particular religious grounding, that usually is helpful, but not necessarily for all the family or friends," added Sr. Carr. Issues were raised concerning how to be accepting and caring to people who believe differently from staff or profess no faith. Personal acceptance & comfort with one’s own mortality & faith, without preaching, is an issue. v

To experience the death of all three of your sons is incomprehensible to most of us. Yet, Joyce Donlan, MS, has experienced it in a span of 6 years. Her sons died from AIDS, which gave extra grief from stigma, fear of what people might think, and ignorance about the disease & its transmission. Her boys received tainted blood products as young hemophiliacs. Donlan appreciated the opportunity to remember her sons and possibly have an impact on end of life care by speaking at the NCCC conference.

Donlan highlighted several points about end of life care, starting with the design and placement of equipment in the hospital or care facility. "You should check if the bed is long enough for a tall person? Do the sheets put pressure on the toes? Is the patient "on display" with the room arrangement? What are you saying within hearing range or in front of others about the patient?" said Donlan.

Confidentiality and dignity were two key issues. Donlan cited an instance where privacy was a concern when picking up prescriptions at a local pharmacy. "The bottles were left on the counter for anyone to read, and since the medication I was picking up was widely known as an AIDS treatment, that information in the wrong hands could cause the patient great harm in his career, relationships, etc.

She addressed the dignity issues of toileting when brain functions are not cooperating with the rest of your body. One of her sons missed the commode chair beside the bed and a nurse did a wonderful job of relieving the embarrassment with a funny remark they could both identify with.

Donlan closed with recommendations about loving and caring for every dying person, no matter who they are or how they got sick. She was with three young men in their deaths and was glad she was there. They were loved, valued, contributing, and now missed. v

Conference Objectives

To facilitate an interactive discussion among key players in provision of end-of-life care (e.g. family members, healthcare professionals and administrators, policy makes, social workers, counselors, clergy/pastoral care providers, ethicists) about the barriers to end-of-life care and to formulate concrete action plans for overcoming the barriers.

Participants:

1. Identified end of life care issues, barriers, and strategies for solutions.

2. Engaged in focused discussions with diverse stakeholders.
3. Facilitated new collaborative relationships.
4. Developed initial action plans for local follow up activities.

What do you mean "END OF LIFE CARE"?  End of life care begins when curative care is no longer possible.  It is sometimes called comfort care, or palliative care

• End of life care is based on acceptance of all persons and their families, as defined by the person who is dying.
• End of life care accepts death as a natural process and part of the full life cycle.
• End of life care accepts the legitimacy of palliative care and can include complementary care.
• End of life care serves the needs of the person who is dying and their family.  Ti is holistic so that social, Psychological, spiritual, relational, financial, ethical, and medical concerns are addressed appropriately for each person receive end of life care.
• The goal of end of life care is to relieve pain: Social, emotional, psychological, and spiritual pain, as well as physical pain.

Planning Committee

A Special Thanks... to facilitators who are key to meeting the objectives of such an ambitious and innovative conference.

An Educational Guide on End of Life Care Law and Public Policy in Nebraska

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