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Caregivers - Sources of Strength
Ernest H. Rosenbaum, MD

Sources of Strength
Goals of the Legacy Project
Elements of the Legacy Project
Report from the Institute of Medicine

Being a caregiver frequently requires day-to-day interactions with a patient, family and medical team with the goal of normalizing life as well as possible with a total supportive care program. It requires empathy and compassion to meet the physical and psychosocial needs of the patient and family in order to reduce the burden of cancer patient problems, as well as the psychological strain and depression and, physical deterioration and death. The outcome depends on compassionate care from caregivers. There are many personal gains and satisfactions for the caregiver, as s/he helps the patient and family cope with past, current and future problems. 1

There is a growth process, as changes occur in both patient and family as they support each other and gain knowledge and act using available resources and their personal strength in the caring process. It is a highly stressful situation, often with great frustrations, disappointments, and sometimes partial or even complete burnout in both patient and family, as well as the caregivers.

There is a great influence on the caregiving process based on the patient and family's cultural, religious, spiritual, ethical and philosophical background. Family kinship plays a major role in supporting and giving care in addition to the designated caregiver. There is great appreciation for services rendered, as well as frequently gaining great satisfaction from the process of caregiving, especially during special moments and occasions that can exist daily during the caregiving process.

It is often difficult to organize and coordinate the caregiving process at the beginning, but with time, the process evolves into a planned supportive care program, which can have great satisfaction for all involved - patient, family and caregiver.

The hope is to comfort, control suffering and pain, and provide both physical and emotional support for patient and family. Caregivers are often the sources of strength, as well as setting the direction for improving the quality of life through caregiving, which helps maintain and enhance the well-being of patient and family.

Sources of Strength
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1. From the medical team - hospital staff and physical and psychological support.

2. The personal resiliency, strength, and will to live to improve quality of life by the patient, which depends on inner strengths, religious and spiritual beliefs, and hopes for the future.

3. Controlling anger, disappointments and frustrations related to the illness are often partially diffused by supportive care and religious/spiritual beliefs. Appreciation that fate has been unfair is often blamed on behaviors of the past or blaming God for letting them down, which, in part, is often modified by faith in God and hope for some stability or improvement in the future, or at least a relief of suffering and a potentially peaceful death. Often, there will be an appraisal of one's life, and changes are frequently made toward either improving one's legacy or through supportive beliefs. Despite all the problems, faith in God's benevolence provides hope and strength and encourages hope for a better outcome.

For patients who have gone through diagnosis and therapy and who are failing, hope often shifts from cure or remission to thoughts of end-of-life care, spending time with family and friends, and trying to hope for and accept a good peaceful death.

Waiting to Die
Waiting to die is often a very distressful time when one knows that death is coming in the near future. It can be hours, days, weeks or months during which time fear, anxiety, and existential thoughts are present needing supportive compassionate care. Many types of positive time-occupying projects can be helpful. We began tape recording life-histories of patients and families as a part of the legacy project to help understand and make a family recording about the meaning of their life. 2

Goals of the Legacy Project
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The goals of the legacy project are to enable a family to come to a clearer understanding of the meaning of their life history, love and interrelationships, and to create a record that will exemplify the significance of the family's life story. Personal interviews via audio and video camera recordings (transferred to CDs or DVDs) create a permanent life record of memories that can have great significance for future generations.

Over the last twenty years, there has been a growing interest in recording family histories and family trees. Computer programs are now available which can help organize a family tree and history (e.g.,,,

Sometimes, a family history is documented because of family pride or interest in seeking information on where ancestors came from, their occupations, and how they lived. Other times it is done to obtain genetic or medical information which can be of vital value for family descendants.

We started the Life Tape Project in the early 1970s initially making audiotapes and, later, video recordings, CDs and DVDs of cancer patients and their families to record their memories and thoughts, family history and stories, philosophy of life, wishes, goals, legacy, and family medical information.

The Life Tape Project helped us appreciate the importance of family histories and stories. As the project progressed, we found that for some families the sharing of family history and philosophies became a turning point in their lives despite the fact that the interview was only 1-2 hours. This gave patients the opportunity to reassess their personal philosophies and goals as they talked about their lives, affording them the chance to identify and understand their legacy to their family and, if necessary, make life changes to clarify relationships.

Elements of the Legacy Project
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1. Creation of an Ethical Will, which is a personal written or dictated record of your and your family's stories, life philosophy, legacy, and goals. Ethical wills are a way to share your values, achievements, blessings, life lessons, hopes and dreams for the future, love, and forgiveness with your family, friends, and community.

Ethical wills are not new. Initially, ethical wills were transmitted orally. Over time, they evolved into written documents.

The Hebrew Bible first described ethical wills 3000 years ago (Genesis Ch. 49). References to this tradition are also found in the Christian Bible (John Ch. 15-18) and in other cultures. Written for succeeding generations, the ethical will offers an opportunity to add to personal family knowledge and history to express one's life accomplishments, values, and legacy wishes for the family.

An ethical will is not considered a legal document as compared to a living will or last will and testament which are legal documents.

Examples of categories for Ethical Will:
Your personal philosophy
Religious philosophy
Thoughts about hope and the future
Thoughts about your family legacy

For a suggested list of Ethical Will topics, see Appendix A.

2. Creation of a Family Tree with pictures of family members. An organized family tree provides a basic family history outline that can help prompt memories of early years, ancestors, and family stories. This has been made easier with the use of personal computers, the Internet, and commercial genealogy programs.

A diagram of a family tree is illustrated below followed by an example of the basic types of information to record. Your family's experience may include additional events, history and information that you want to include, such as dates of marriage or immigration from one country to another.

By including any medical history that you know for ancestors and family members, you provide very valuable familial hereditary information and potential future guidance for prevention of medical illnesses (such as heart disease, stroke, diabetes, obesity, osteoporosis and cancer) and/or help make a genetic reconstruction of your family's heredity. In collaboration with other health agencies, the U.S. Surgeon General has created the Family Health Initiative to provide tools for families to enter and organize their family's health history to share with their physicians. Appendix B contains details about this program, website information, and a copy of the Surgeon General's Family Health Portrait forms.

Information on Family Tree construction is available in Appendix D.

Appendix C contains information on creating and maintaining your own electronic medical history record in a portable format to share with your doctors.

3. Record the Family History with stories and examples of past and current generations using the family tree as a guide (instructions for the Legacy Tape interview are available in Appendix F). Family stories can be linked to various persons on the tree, describing their relationship to the storytellers and the family. A guide sheet is provided so the family history interviews can follow a similar pattern, including, for example, name, age, relationship, birthplace, marriage (wife or husband or partner), birthday, where they lived, list of parents, grandparents and children and stories about each.

The Hallmark® greeting card company, in collaboration with Marcia Cross, has developed an inexpensive easy-to-use kit called The Legacy Keeper to make digital audio recordings of your family history with interviews that can easily be transferred to your computer or to DVD. The kit includes a list of questions that can help you conduct your interviews, and also provides folders for special family documents and photographs. (More information on this kit is provided in Appendix D.)

4. Organize audio and video recordings on DVDs for family members. Videocamera recordings of current family members can be combined with photographs of ancestors and relations and edited to reflect the family growing up. Older movie films and recordings can be retrieved and added to future films and video recording segments can be converted to DVDs as generations continue to grow and mature.

5. Creation of a Scrapbook with pictures, literature, documents and articles about the family history and important events. All pictures, documents and articles can also be saved by digital photo scanning as memories for future generations which otherwise might be lost. Separate albums can be created for individual family groups, for instance, by generation or specific branch of the family line. Photographic stores, copy stores, and many pharmacies provide reproduction services for those wishing to make multiple copies of family photographs. Walgreens®, for example, will transfer videotape, movie film, slides and photographs or other printed documents to digital files on DVDs. For more on scrapbooking, see Appendix E.

6. A Legacy of Love for your family and friends can be created to provide clear decisions and planned social, legal, financial, and end-of-life arrangements to spare your survivors an inheritance of scattered papers and countless confusing details. (Example forms are provided in Appendix G.) Preparing a legal will is one of the most important responsibilities you have.

Report from the Institute of Medicine
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There has been a report from the Institute of Medicine 3 on what they describe as a good death, "Free from avoidable distress and suffering for patients, families and caregivers."

It is important to control distress and suffering symptoms, such as pain and psychological distress, with both medical and spiritual support, and maintaining goals as limited as possible for purposes of sense of well-being and meaning of life as patients transition toward end-of-life. Physical symptoms need to be controlled as well as possible with optimal supportive care.

Chochinov has proposed dignity therapy with promising expectations. 4,5 When one loses dignity, one also may lose quality of life and have symptoms, such as anxiety, distress, and decreased psychological and physical functioning. In a Holland Study, 10 patients often chose euthanasia or assisted suicide when they lost their dignity.6

Chochinov feels that at the end-of-life, people often are more susceptible to loss of dignity, as they are losing many of the factors that have maintained their personhood. Medical care should promote dignity, as well as control of symptomatology, especially to prevent suffering at the end-of-life.

End-of-life care requires special medical attention, as therapy and supportive care, although having played a vital role, are no longer the goal, and a different type of supportive care is now required to assure as good a death as possible. The type of health care provided through physicians, nurses, and the home-care team/hospital team makes a major difference in quality of life during end-of-life care.

Preventing suffering is the major goal, which can be achieved in the majority of cases through good pain control and supportive care. The first thing is to do an analysis of the current problem and prescribe solutions. The solutions are modified depending on success. Providing physical and psychological supportive care, including spiritual and existential care, are emphasized. Chochinov describes general activity as "General activity refers to the notion of something transcending the event of our death that will continue to resonate with importance or meaning in the world we leave behind, or for the people we leave behind." This is promoted by dignity therapy.

Dignity therapy "invites people in recorded conversations to talk about things they would most want known or remembered, or things that really speak to the essence of who they were. 7 These conversations, along with edited transcriptions that are bequeathed to loved ones, are meant to reaffirm their sense of personhood."

Dr. Chochinov feels that "despite your illness, symptoms, challenges and losses, that the essential component that defines you is still there. It's there and evidenced by the fact that you can speak about it."

Dignity therapy includes messages for family and life history for family members. The interview centers upon the interests and the messages for families and is very flexible. In his study from Australia and Canada, he reported that 91% of patients reported being satisfied or very satisfied with the experience and that 76% felt that it heightened their dignity.

Chochinov has noted that there is great vulnerability near the end of life, and great care must be taken to capture accurately the feelings and essence of that person. Sometimes, there are cognitive problems or recall problems; thus, accuracy may be somewhat limited, and caution is recommended as the interview continues.

1. Seema Mehrotra and Prathima Sukumar, "Sources of Strength Perceived by Females Caring for Relatives Diagnosed with Cancer: An Exploratory Study from India," Supportive Care for Cancer, 15: 1357-1366, 2007.
2. ASCO report 1978
3. Field, M. J., Cassel, C. K., eds. "Approaching Death: Improving Care at the End of Life." Washington, D. C.:National Academy Press; 1997
4. Chochinov, H. M., "Dying, Dignity, and New Horizons in Palliative End-of-Life Care," CAA Cancer Journal for Clinicians, 2006; 56: 84-103 

5. Chochinov, H. M., "Dignity Conserving Care - A New Model for Palliative Care. Helping the Patient Feel Valued." JAMA, 2002; 287: 2253-2260 

6. Onwuteaka-Philipsen, BD., van der Heide, A., Koper, D et al, "Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995 and 2001", The Lancet 2003; 362: 395-399 

7. Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement,S., Harlos, M. "Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life" Journal of Clinical Oncology, Vol 23, No 24 August 20, 2005: pp. 5520-5525

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