Hospice Care and End of Life Issues

God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

— St. Francis of Assisi

When a patient and her healthcare team decide that the cancer can no longer be controlled or improved with treatment, they may choose to end treatment. Palliative care may begin, focusing on making the patient comfortable. This often includes medications and treatment, but these are used for controlling pain and other symptoms.

Patients and their family members often want to know how long a person is expected to live. This can be a difficult question to answer. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or under-estimating the patient’s life span. They might also be fearful of instilling false hope or destroying a person’s hope.

The time at the end of life is different for each person. Each individual has unique needs for information, care and support. Some of the issues that may arise include spiritual, psychological, legal, medical and financial ones. If you and your family are able to plan ahead, the situation may be less stressful or traumatic, and more peaceful, for everyone involved.

Services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice agency often provides such services (more about hospice later in the section).

SOME SUGGESTIONS FOR THE PERSON FACING THE END OF LIFE

Talk about death and make your wishes known. Rarely, if ever, do we have conversations about how we want to live in the final phase of our lives. It is important to have thoughtful and serious discussions with your loved ones about what you want as the end of life draws near. The time to discuss your views about end-of-life care is before a crisis hits.

Plan ahead. Let your loved ones know what you want while you are able to communicate your preferences for care. Continue to have regular discussions about your views, as they may change over time. Plan ahead by drawing up advance directives (legal papers which allow people to state their decisions about end-of-life care ahead of time). Advance directives can usually be obtained from your healthcare provider or hospital. They can be changed at any time, even after they are signed. You don’t need a lawyer to complete an advance directive, but each state has its own laws for creating them. For more information and assistance with advance directives, see the Resources at the end of this section. Advance directives include:

• Living Will. A set of written instructions recording a person’s wishes about medical care intended to keep the person alive. It is used if a patient becomes terminally ill, cannot function, or is not able to communicate or make decisions. A living will protects the patient’s rights and removes the burden of making decisions from family, friends and physicians.
• Health Care Proxy. The patient chooses someone who makes medical decisions if the patient is unable to do so. Generally, people assign someone they know well and trust to represent their wishes when they can no longer do so.
• Durable Power of Attorney for Health Care. A legal paper that names a person’s health care proxy. Once written, it should be signed, dated, witnessed, notarized, copied, distributed and put into the patient’s medical record.
• Durable Power of Attorney for Finances. A separate legal paper from the Durable Power of Attorney for Health Care. It appoints someone to manage the patient’s financial affairs if the patient is unable to do so.

Be sure to tell your doctor or your healthcare team about what you want regarding end-of-life care. Your doctor needs to know what is important to you to help in making decisions about your care. Let your doctor know if you have appointed a healthcare proxy and who that person is. It is important to remember that plans aren’t always permanent and that your care can be changed if your wishes or your condition change.

What are some ways that caregivers can provide emotional comfort?
Everyone has different needs, but some emotions are common to many people who are dying, including fear of abandonment and fear of being a burden. There may also be concerns about loss of dignity and loss of control.

Some ways caregivers can provide comfort are as follows:

• Keep the person company—talk, watch movies, read, or just be with the person.
• Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
• Be willing to reminisce about the person’s life, and look through pictures and scrapbooks together.
• Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
• Reassure the patient that you will honor advance directives, such as living wills.
• Ask if there is anything you can do.
• Respect the person’s need for privacy.

HOSPICE

What is hospice?
Hospice provides compassionate care to people at the end of their lives. Hospice involves healthcare providers and volunteers who provide medical, psychological and spiritual support to terminally ill patients and their loved ones. The focus of hospice is quality of life—peace, comfort, and dignity. A major aim of hospice is to control pain and other symptoms so the patient can remain as alert and comfortable as possible.

Hospice services are available to persons who are no longer being treated for their cancer (other than treatments that help with pain or other symptoms). The typical hospice patient has a life expectancy of six months or less. Hospice programs provide services in various settings: the home, hospice centers, hospitals or skilled nursing facilities. Patients’ families are also an important focus of hospice care, and services are designed to provide them with the help, information and support they need.

Hospice can be an invaluable service to patients at the end of life and their families. Doctors and healthcare providers are usually focused on making patients better. They often are not experts about end of life issues and dying.

People who work in hospice are experts about death and dying and the kinds of issues that a patient and his or her family face. For example, they can provide medications to keep the patient comfortable. They may be the ones to alert the family when the patient is nearing death. Many hospices have grief support groups to help family and friends after the patient’s death.

How do I find hospice care?
Sometimes, a doctor refers a patient to hospice care after treatment for the person’s cancer has ended. Be sure to ask for a referral if the doctor does not do this.

You can also ask the nurse, medical social worker or discharge planner for a referral or to help you find the hospice agencies in your area. Also, see Resources at end of this section.

How do I pay for hospice care?
Medicare, Medicaid and most private health insurance companies cover hospice care for patients who meet the eligibility criteria. There may be co-pays and deductibles that apply. Most hospice services are based upon need rather than the ability to pay. Before services begin, find out what the costs will be and what is or is not covered.
The Medicare Hospice Benefit is designed to meet the needs of those who have a terminal illness, providing them and their loved ones with special support and services not otherwise covered by Medicare. Call 800.633.4227 or see www.medicare.gov for more information about Medicare and hospice.

Parts of this section were adapted from educational publications about end of life care and hospice from the National Cancer Institute, 800.4.CANCER or www.cancer.gov.

RESOURCES

Organizations

Aging With Dignity
888.5.WISHES
www.agingwithdignity.org
Advocates for the needs of elders and their caregivers, with emphasis on improving care for those at the end of life. Offers the Five Wishes advance directive (legally valid in North Carolina).

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer, diagnosis, treatment and many other topics. Free educational materials available on a wide variety of topics relating to cancer, including hospice.

Association for Home Care and Hospice
of North Carolina (Raleigh, NC)
919.848.3450 or 800.999.2357 (in North Carolina)
www.homeandhospicecare.org
Call to get locations and services of hospices and home care in your area of North Carolina. Has educational booklets.

Cancer Care
212.221.3300 or 800.813.HOPE (4673)
www.cancercare.org
All services free. Staffed by social work professionals who provide counseling, tips and support, including for end of life issues and filling out advance directives. Has information about end-of-life issues and hospice.

Carolinas Center for Hospice and End of Life Care
919.677.4100 or 800.662.8859
www.carolinasendoflifecare.org
Provides information for patients and providers about hospice. Web site has a “hospice locator” to assist in finding a hospice near you.

Hospice Association of America
202.546.4759
www.nahc.org/HAA/home.html
Offers several booklets about hospice that can be ordered for a fee or downloaded free from the web site.

Hospice Education Institute
207.255.8800 or 800.331.1620
www.hospiceworld.org
Provides information and referrals about hospice and palliative care and issues relating to caring for the dying and the bereaved.

Hospice Foundation of America
800.854.3402
www.hospicefoundation.org
Offers books, videos, brochures and a newsletter (Journeys) about hospice, living with grief, and a Guide to Recalling and Telling Your Life Story.

National Cancer Institute’s Cancer Information Service
800.4.CANCER or 800.332.8615 (TTY)
www.cancer.gov
One of the best resources available for cancer patients, this government organization provides the toll-free hotline above in English and Spanish for questions about any type of cancer. Has several booklets about end of life care, advance directives and hospice.

National Family Caregivers Association
301.942.2302 or 800.896.3650
www.nfcacares.org
Education, support and advocacy for caregivers. Free membership for caregivers includes a newsletter and welcome kit.

National Hospice and Palliative Care Organization
703.837.1500 or 800.658.8898 (Helpline)
www.nhpco.org
Information about hospice, how to select a program, communicating end-of-life wishes, Medicare and finding a hospice program close to you. Staff can answer calls in Spanish and some Spanish-language booklets available.

Partnership for Caring: America’s Voices for the Dying
202.296.9455 or 800.989.9455
www.partnershipforcaring.org
Helps patients and families participate in end-of-life decision making. Has educational booklets and videos about end-of-life issues. Provides state-specific living wills and medical powers of attorney.

Books and More

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, by Maria M. Meyer with Paula Derr, RN (2002). Covers caregiving basics, including home preparations, dealing with emergencies, bathing and more.

Dying Well: Peace and Possibilities at the End of Life, by Ira Byock, MD (1998). A book with the message that the immediacy of death can give rare opportunities for emotional and spiritual growth.

The Dying Time: Practical Wisdom for the Dying and their Caregivers, by Joan Furman and David McNabb (1997). Addresses concerns such as location of care, importance of basic nursing skills, and recognizing the signs of a failing body.

Facing Death and Finding Hope: A Guide for the Emotional and Spiritual Care of the Dying, by Christine Longaker (1998). Written by a widow who lost her husband to leukemia, the book identifies typical fears and struggles experienced by the dying and their families. Uses the Tibetan Buddhist perspective on death. Available in Spanish.

Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying, by Maggie Callanan and Patricia Kelly (1997). Two hospice nurses give insights into the experience of dying.

Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn and Joan Harrold (1999). A guide to end-of-life care that includes advice on making care decisions, finding treatment and support resources, and communicating with doctors.

The Hospice Choice: In Pursuit of a Peaceful Death, by Marcia Lattanzi-Licht, John Mahoney and Galen Miller (1998). This book from the National Hospice Organization introduces the philosophy and practice of hospice care.

The Next Place, by Warren Hanson (1997). This lovely, peaceful book was written to help adults explain death to children. In this children’s story, the adults affirm their own belief in life beyond this world.

Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill, by Cappy Capposela and Sheila Warnock (1995). A guide on how to organize a group of caregivers, including advice on burnout and spreading responsibility.

She Came to Live Out Loud: An Inspiring Family Journey Through Illness, Loss and Grief, by Myra MacPherson (1999). Gives advice for dealing with grief, drawing on the author’s personal experience with the family and friends of a dying woman.

Tuesdays With Morrie: An Old Man, A Young Man and Life’s Greatest Lessons, by Mitch Albom (1997). An account of the author’s visits with his former professor, who is dying. Describes how the author gains some perspective on his own life through the life and death of his old friend.

Web Sites

Cancer-Hospice Discussion List

www.acor.org
A public online support group for those dealing with cancer and hospice care issues.

Compassion in Dying
www.compassionindying.org
National advocacy organization to improve pain and symptom management, and expand end-of-life choices. Has advocacy, legal and support materials.

Dying Well: Defining Wellness Through the End of Life
www.dyingwell.org
The web site of Dr. Ira Byock, author of Dying Well: Peace and Possibilities at the End of Life. Resources for people facing life-limiting illness.

Facing-Ahead Discussion List
www.acor.org
This public online support group is for people facing the death of a loved one.
Fernside: For Grieving Children

www.fernside.org
Has information on how to help a grieving child following the death of a loved one. Includes a section just for children.

GriefNet
http://griefnet.org
An Internet community of people dealing with grief, death and major loss. Offers 47 e-mail support groups dealing with assorted grief issues.

Growth House, Inc.: Online Community for End of Life Care
www.growthhouse.org
Has end-of-life care resources, information on grief, care for the dying, major illness, hospice and more.

Home Care Guide for Advanced Cancer, from the American College of Physicians
www.acponline.org/public/h_care/
Guide for understanding what happens to patients terminally ill with advanced cancer.

Hospice Net
www.hospicenet.org
Contains information about many end-of-life issues. Provides information and support for patients, families and caregivers.

Last Acts
www.lastacts.org
A national coalition to improve care and caring at the end of life. Offers a Palliative Care Resource Center, Kit’s Legacy (a personal story about a breast cancer patient) and Last Chapters (personal stories).

Mothers’ Living Stories Project
www.motherslivingstories.org
Connects ill mothers with trained volunteers in a process that is healing to both. Volunteer Listeners guide mothers in reviewing their lives and recording their stories for their children.

On Our Own Terms: Moyers on Dying, from PBS
www.pbs.org/onourownterms
Companion guide to the PBS series on dying and end-of-life care. Has information and resources on end-of-life tools, care, grief and comfort, final days, and therapy and support.