Bereavement and End of Life Issues > Chapter 5 - End-of-Life Issues

Chapter 5: End-of-Life Issues

VI. End of Life Issues

Most people, when they think of dying, would prefer a quick painless death.In conversations you may often hear people who hope to die peacefully in their sleep.There are few who would desire a long-term painful terminal illness.However, that is the way many do pass from this life.

A. Terri Shiavo—Advanced Directives

In any case, as we age we naturally become more concerned about end of life issues.This can include concern for family, health, pain management, in home versus out of home care and hospice care. In addition, there are questions regarding what interventions an individual wants: The Terri Schiavo case brought this issues to national attention in a long term legal battle that even went to the highest courts and halls of congress. In this case Mrs. Schiavo had been bed ridden for over 13 years as a result of brain damage caused by a heart attack. She was unable to care for herself and could only be fed through a feeding tube. The debate was between Michael Schiavo, (Terri’s husband) who claimed that Terry was unaware of her surroundings and would better off if her feeding tube was removed and she was left to die; and Terri’s parents, who strongly believed that Terry was somewhat aware of her surroundings, that as long as she was living through being fed that she should continue to live, and held out hope that she may sometime gain greater consciousness.

The debate often surrounded what Terri would want. Because she was young she had not concerned herself with such issues before her neurological damage, and she had not made out any legal document with advanced directives to instruct what her preferences would be. Eventually the courts rules that Michael Schiavo could have the feeding tube removed and Terri passed a way shortly thereafter.

Decisions about healthcare at the end of life are difficult, especially if they are being made for a person who has not expressed their desires. Regarding this topic it states at www.growthhouse.org that:

It's important for a person to express preferences about health care at the end of life. This can be done through the use of formal legal documents which grant a durable power of attorney for health care to someone you trust to make decisions for you should you become unable to do so yourself. These directives, which may be called living wills or advance directives, must be tailored to your specific situation and location, as laws vary around the world. These directives may cover any issue you consider important. A very common concern revolves around tube feeding and related issues in palliative nutrition and hydration at the very end, including difficult decisions about withdrawing life-sustaining treatment.

B. Pain Management

Another issue at the end of life is that of pain management. Terminal diseases such as Cancer and AIDS are typically slower and more painful ways to die. Being able to have that pain managed makes a big difference in the quality of life a person experiences at the end of life. Therapists can utilize relaxation techniques, including guided imagery, to help lessen one’s pain. Physician’s can prescribe appropriate medications which help reduce the painful symptoms of diseases and that can also help reduce disagreeable symptoms such as Nauseua, skin irritations, and dehydration.

Just as in Maslow’s hierarchy of needs, where safety is the primary concern that trumps all others, so, pain grabs front and center for end of life issues. Once pain is managed, then other possible concerns can be addressed—such as preparing for death, concern for family, and burial preferences if they have not yet been discussed.

C. Hospice Care

Decisions regarding hospice care are also included in the end of life issues. Hospice care is not for curing a patient, but rather providing for the dying person’s comfort and dignity. This can include pain management, and emotional and spiritual support. This includes the physical care of the patient but also their psychosocial needs and those of their family and loved ones. It may take a period of time for the hospice care to identify the best individual regimen of pain management and care for an individual. For this reason it is suggested at growthhouse .org that families do not wait until the last minute to look at hospice care, but earlier so that the care can already be in place when greater difficulties arise.

The United States Department of Heath and Human Services provides the following Fax Sheet for Families to help answer their questions regarding Hospice Care: http://www.aoa.gov/press/fact/pdf/fs_hospice.pdf

In addition to the above Fact Sheet, the following provides information from the National Hospice and Palliative Care Organization (NHPCO) on the services that Hospice Care provides:

Introduction

Helping to care for someone who may be nearing the end of his or her life can be a surprising, challenging, and rewarding experience. Whether you are a friend, family member, loved one, co-worker, or paid caregiver, the care that you provide does make a difference.

The last years of life are a time of many changes. The changes taking place in the life of the person for whom you care may raise questions and concerns about how best to meet their needs. Information and support is available. Your local hospice can help you understand and prepare for these changes.

When To Consider Calling Your Hospice:

  • When you have questions about what to expect physically, emotionally and spiritually as the end of life approaches
  • When you need information about resources that can help you manage your responsibilities as a caregiver
  • When you have questions about how to have sensitive conversations about treatment choices, living arrangements, and personal care
  • When you want help with preventing and managing symptoms related to an illness or its treatment
  • When you want guidance in finding the opportunities for hope, comfort, and meaning that are part of this important time of life
  • When you are experiencing feelings of loss, sadness, or grief associated with the illness or death of a loved one
Hospice Programs Can Offer You:

  • Support as you make decisions about treatments and options for care
  • Information about advance directives, such as living wills, that can help communicate choices about care
  • Medical treatment that aggressively seeks to prevent, assess, and treat symptoms of discomfort and disease progression
  • Comfort-focused (palliative) care provided by coordinated teams of professionals that include nurses, home health or certified nursing aides, social workers or counselors, chaplains, physicians, and trained volunteers
  • Care that is guided by your goals and priorities
  • Bereavement support to help you find comfort and hope

Hospices serve their communities by being a resource for meeting end of life needs. You can rely on your hospice for help in dealing with the practical, physical, emotional, and caregiving issues that are part of the last years of life. Hospice is not about giving up. It is about comfort, well-being, and quality of life. Anytime you need information from an experienced team of caregivers, contact your local hospice. They are here to help.

The following is a case study of how Hospice may help:

Lydia’s Case

Lynda was 57 years old when she was diagnosed with liver cancer. In spite of the best medical treatment her doctors could provide, her cancer proved incurable. Although the prospect of dying frightened her, Lynda wanted to receive professional assistance to prepare herself and her family for her death. She realized that she wanted to be cared for at home by her sister, Sara. The local hospice service made the arrangements so that this would be possible. Hospice staff made sure that Lynda’s family would have the equipment they needed, and trained Sara in how to administer medications to relieve Lynda’s pain. The hospice program also sent a registered nurse to the house to oversee Lynda’s care, and the nurse consulted with a doctor to make sure Lynda was as comfortable as she could be during her final weeks. In addition, the hospice service sent a personal care attendant to bathe Lynda twice a week, and a social worker and a clergyman to provide spiritual and grief counseling for Lynda and Sara. Lynda lived the last six weeks of her life at home before she passed away surrounded by Sara and the rest of her family.
National Hospice and Palliative Care Organization (NHPCO)

VI. Conclusion

This course has addressed the issues that clients and their families address during the last months of a person’s life, and the bereavement that accompanies the illness and loss of another. Case studies were provided to illustrate the assessment of issues that accompany bereavement in addition to effective interventions for treatment.

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The Author

Lance Parks, LCSW has a rich and diverse history of educational, clinical, training and administrative experience. Mr. Parks is a certified Group Home Administrator in the state of California and serves as an Associate Director and Licensed Clinical Social Worker at a residential placement facility for adolescents ages 13-18. Mr. Parks' counseling experience includes the following populations and settings: HIV positive inmates at CIM in Chino, California, outpatient Spanish speaking clinic, private psychiatric hospital, skilled nursing facilities (nursing homes), private family counseling clinic, and adolescent residential placement.

In addition, Mr. Parks has helped plan, develop and/or present training programs and conferences for the following personnel: group home staff, state certified group home administrators, probation officers, social workers, mental health personnel, LCSWs and MFTs. Since 1999 Mr. Parks has served on the continuing education committee, residential care committee and juvenile justice committee for a statewide association of private nonprofit child and family serving agencies.

Mr. Parks received his Bachelor of Science in Family Sciences with a minor in Spanish from Brigham Young University, and his Master of Social Work from the University of Southern California.
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Question No.7. The goal of hospice care is to:

a. Cure the patient
b. Provide comfort to the patient
c: Pain management
d. All of the above
e. Both b and c only

Question No.8. Hospice is a resource for which of the following?

a. Support for decisions about treatment and options for care
b. Information about advanced directives
c. Bereavement support
d. All of the above
e. None-- Hospice only provides care for physical symptoms

Question No.9. Pain management techniques include all of the following except:

a. Relaxation training
b. Intense physical exercise
c. Physician prescribed pain relievers
d. Medications to reduce rashes and nausea

Question No.10. The Terri Shiavo case was a primary illustration of the need to:

a. Create legal "Advanced Directives"
b. Obtain bereavement counseling
c. Provide hospice services
 
Bereavement and End of Life Issues > Chapter 5 - End-of-Life Issues
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