September 23, 2008
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
Caretakers of Survivors
Caregiver Needs and Support
Family and Friends as Caregivers
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.
- 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
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., Ancestry.com, Familytreemaker.com, familytree.com).
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.
- 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
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.
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.
Caretakers are now included in national programs along with cancer survivors. These include spouses, siblings, and parents, as well as friends, along with the supportive care team.
Caregivers, through their devotion and services, may acquire stress-related and psychosocial problems, which can impair their efficiency in providing care. Post-traumatic stress symptoms have also been found, and treatments, essentially, have been instituted. Supportive care for caregivers has been helpful in promoting their goal of efficient care for survivors, especially if they have the need for end-of-life care, as well as helping with the psychological trauma induced by the cancer process on both survivor and the family.
It is estimated that there are approximately 45 million people in the United States providing care for a loved one, relative or friend with many diseases, such as cancer, heart disease, Alzheimer's, and Parkinson's. Caregiving requires a high level of responsibility but can cause devastating emotional and physical problems, as well as a financial toll on many families. Caregivers, as well as families, often have an increased amount of stress, depression, fatigue, and physical and mental problems.
Recent research studies have shown that supportive care for caregivers is important, and, often, they need rest periods and respond well to supportive telephone conversations, counseling, and in-home training assistance. Studies have shown that even brief periods of supportive counseling and periodic rest retreats can have very beneficial effects in reducing the physical and psychological burden of the caregiving process. An organization, cancercare.org, has a podcast of their workshop for coping with a cancer patient with advice on care, as well as how to deal with family problems, holidays, and other issues.
It is important for caregivers to reduce their own stress levels and accept additional help as needed.
Financial resources are often expended rapidly, and sometimes because of the extensive need for care, a working relative will quit her job to become the caregiver.
Thus, caregiving can be a challenging change for a family member or friend, but with proper guidance, nursing help and directions, the quality of life for patients can be enhanced during this difficult period of life.
Those who have religious or spiritual beliefs often find both meaning and help during the stressful period of having cancer, and the need of caregiver support. Their faith helps support and provide meaning for how they live through the end phase of the cancer process. Prayer often has value in maintaining faith no matter what the future will be, turning over one's fate to God and accepting what they believe is God's role in their fate, one hopes that God will help protect not only themselves but also their family and friends, as well as hope for a better outcome, whether it be reduced suffering and pain or a peaceful end-of-life.
Assessment of the Caregiver Role
The major role is supporting both the physical and psychological needs of the patient, as well as meeting the positive and negative expectations as much as possible, and improving quality of life through a very difficult period. Their services go beyond just duty, as there is a strong emotional bond component between caregiver and patient/family. By giving, one offers a personal satisfaction that is often the major reward gained by the caregiver as she meets current and future needs. The caregiver's empathy and compassion in managing multiple problems often becomes a totally encompassing role. Caring for people with advanced disease, dementia, or Alzheimer's requires a special attitude and the ability to adjust to each patient and family's physical and personal problems, which usually gives the caregiver a great deal of personal satisfaction from a difficult job.
The prior experience of the caregiver is very helpful in delivering care and coping with existing and future problems. It is a difficult task to take care of a sick person, whom you often learn to love and have both empathy and compassion for and see failure, which is the usual path in palliative care. This requires a great deal of inner personal strength and faith in one's job.
It is a difficult job to be a caregiver because of the emotional strain and hard work required, and, often, the patient and family are vital in supporting the caregiver. The optimism that things can get better or adjusting the goals to relief of suffering, pain and a peaceful death depend on each individual case, but the strength and hope of the caregiver and for the caregiver help in the coping process. Caregivers often face not only frustration and disappointment but also burn-out and need rest periods to recover both emotionally and physically. With good care, there's a high level of satisfaction, which provides a meaning for quality of life during this phase of palliative care. Often fellow caregivers support each other through sharing their experiences and knowledge and in supporting of each other.
This process is enhanced by many spontaneous events that occur during the palliative care process, which often provide great satisfaction for all involved - patient, family, friends and caregivers.
Communicating with each other and listening to the problems - frustrations, difficulties in care and coping - as well as reviewing many of the positive events that have occurred in life, such as trips, vacations, celebrations, and weddings where the family participated can enhance positive memories of the past and give satisfaction and hope at this time. Trying to enjoy some of the simple events, such as a walk on a sunny day, attending a movie or concert, or just a family gathering can be very life-enhancing.
A review by (two authors) showed that 75% of caregivers achieved a positive personal change through their role as a caregiver for ill patients. Caregivers often learn how to handle difficult situations, as well as tolerate some of the anger and frustrations exhibited by patient, family and friends during the palliative care process.
The goal of a caregiver is to improve quality of life by reducing suffering and pain, as well as provide important sources of strength through their personal services. A great deal depends on the prognosis, as well as the ability of the caregiver to provide hope and a pathway for coping as many difficult problems emerge in the caregiving process. The goal is to try to capture and enhance ways of improving the relationship, as feasible, through emotional supportive care and efforts to relieve suffering and pain, and, then, one can improve quality of life during a physical illness, as well as the end-of-life process. Caregivers often need support themselves, and this is often done through their colleagues, the medical team, or from the family and often by the patient, who show appreciation for the caregiver's services.
There are often failures and deficiencies in any system, but caregivers are a special breed of people whose goal is to provide services that enhance quality of life with a promise that through their interventions, patients can have quality care, peace of mind, and grow to find ways to enhance their lives.
Despite the advances in medical screening, diagnosis, treatment, and improved five-year survival, about a half million Americans die yearly from cancer. It is considered a chronic but also life-threatening disease, causing existential apprehension for patients, family and friends.8
The existential threat and impact often evokes spiritual and/or religious thoughts along with concerns of treatment and survival. Family members are also concerned about hereditary (family history) prospects and possible susceptibility of also developing cancer, especially for breast, ovarian and colon cancers.
Caregivers often use the role of spirituality, which refers to a search for peace, wholeness with harmony with a higher power, and a sense of meaning and purpose in life.9
Spirituality offers a means of coping to help reduce the stress of cancer and its adverse impact on patient, family, friends and caregivers. The question addressed by Dr. Kim and colleagues is whether spirituality and faith can help with coping and reducing stress evoked by a cancer problem. The effect of cancer differs with each patient, depending on diagnosis, stage of disease, and potential prognosis. This may also evoke psychological distress in caregivers, as well.
A question also asked is whether a caregiver's stress and coping ability can be a buffer at this critical time and reduce psychological distress? Results from this study showed that there was a difference in the level of psychological distress, which was greater in non-gender-specific cancers, such as lung, kidney, non-Hodgkin's lymphoma or melanoma, versus gender-specific, such as breast and ovarian cancers, and in the stage. There was also increased psychological distress in first-degree relatives of breast and ovarian cancer patients. This, in part, may be related to the severity of the type of cancer, such as lung cancer with a poor prognosis versus melanoma with an intermediate prognosis.
Also, support groups for breast and ovarian cancers are more available and used more frequently than non-gender-specific types of cancer.
Kim and colleagues also found that highly spiritual caregivers had a lower level of psychological distress, especially for non-gender-specific types of cancer, where there were increased responsibility and caregiving tasks. Spirituality was beneficial by buffering psychological distress, and this may relate to the poor prognosis of the non-gender-specific cancers.
It was also noted that more research needs to be done on the effects of cancer and various ethnic groups, with different philosophies, spirituality and differences in psychological/social and economic philosophies, as well as religious and spiritual thoughts.
This study found that the caregiver's spirituality and the survivor's cancer type were both important in how caregivers coped and adjusted to the cancer survivor's problems, both physically and psychologically, and that caregivers, who lacked spirituality, were in need of support to help promote faith and better understanding of the meaning of life.
The family also has a significant role in caregiving and support and is usually a source of strength to both patient and caregiver. Their supportive reassurance and provision of comfort for patient, family and friends are positive sources of satisfaction. They are also a source of information and guidance and often provide solutions to problems. They are a vital source of communication between patient, family and the medical team.
Friends are another source of support and strength for patient and family, as well as caregivers, and if there is a long time during the palliative care process, one often sees some diminution in friends‚ supportive care, as it's a wearing process, and frustration and burnout are not uncommon in some cases. Friends are also very important in family and spiritual support.
Caregiving for a sick relative is often a family experience and often provides a chance for siblings to cooperate and become closer under a stressful situation. There is often psychological and physical stress due to the efforts to achieve a comfortable palliative care situation because of the demands, including both time and effort, in order to meet the needs. Frequently, siblings are in different cities and have to make special arrangements to participate in a cooperative caregiving program.
Additional cooperative efforts are needed in preparing for the eventual death in order to reduce potential later conflicts, which often involve dividing personal properties, money, property and inheritance. Frequently, discord becomes apparent due to these potential problems. Solving them ahead of time can help relieve dissention and unhappiness later.
There are also problems where sharing of duties is unequal, either because of time, distance by living in other cities, or due to personal efforts. The frustration of not always meeting the needs, may lead to resentment and unhappiness among siblings.
It is important to meet the challenges and resolve the conflicts as early as possible in order to promote a more harmonious relationship, not only during the caregiving process but also afterwards.
Some family members or siblings are unable to participate, and this could be for many reasons, such as inability, time, or not wishing to participate in the caregiving process. A family meeting where feelings are expressed and problems discussed and resolved as best as possible can lead to better caregiving, as well as keeping family relationships intact.
Each person has different expectations of what they can do, what they wish to do, and how they wish to participate. It's difficult to be critical of others, because each person has his own agenda and his own capacity to perform. By being respectful of the others' needs and wishes, a more harmonious caregiving process can be achieved.
Obtain counseling and help from the medical team's social worker, religious advisors, and other resources, including the family attorney, and try to use their advice appropriately to help cement good relations within the family as part of the caregiving process. Getting consultations, obtaining and using resources, and implementing advice are part of a good caregiving plan and program.
- 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
8. Youngnec Kim, David Wellich, Rachel Spiller, and Corinne Crammer, "Psychological Distress of Female Cancer Caregivers: Effect of Type of Cancer and Caregivers‚ Spirituality Support Care." Cancer (2007), 15: 1367-74.
9. Paloutzian, R., Ellison, C., (1982), Loneliness, Spiritual Well-being, and Quality of Life in: Peplau, L., Pelman, D., (eds); Loneliness: A Sourcebook of Current Theory, Research, and Therapy. Wiley, New York.)
10. CancerSupportiveCare.com The Legacy Project (cancersupportivecare.com/Legacy)
- Reprinted by permission