When one is researching how to prepare for a loved one’s decline or death there tends to be information on what symptoms someone should look for, the needs of a loved one, and resources within the community. One technique that is discussed, though not as often as others, is creating a legacy. Creating a legacy relates to creating some type of memory, tactile item, or reflection with another person or loved one. In the case of a family member being diagnosed with a terminal illness most caregivers focus on the acute issues such as caregiving needs, medications, and concrete supports. It is also important to focus on the emotional aspects that come with this diagnosis as well. Research has shown that psychosocial and emotional needs may be a larger source of distress than physical pain to the terminally loved one.
It is important to understand that individuals cope differently with their loved one’s illness and that existing family dynamics may not change or disappear. However, families who engage in legacy work are more likely to improve their communication with one another and to report positive emotional experiences.
Stages of Grief
To create a legacy project with patients and families, one must understand the Stages of Grief and their complications. Initially conceptualized by Elisabeth Kubler Ross and David Kessler, the five stages are: Denial, Anger, Bargaining, Depression, and Acceptance. As providers, it is important to remember everyone deals with grief differently. Those with terminal illnesses also experience a similar grieving process but within their own sense of self. Having something to focus on such as a legacy project can help a patient find some inner peace. It is important to discuss anticipatory grief—the emotional preparation for a patient’s death—with both the patient and family caregivers. As clients identify positive and negative experiences through their life review, there is an opportunity to identify what the patient may want to leave behind to their loved ones and the world.
Research has shown that families who work on legacy activities experience improved communication, decreased stress, and a higher quality of life during the end of life. This allows patients and family members to participate and reminisce on their lives together and their hopes for the future.
These activities can and will vary depending on the relationship, interests, and any physical or emotional barriers which may arise. Legacy (sometimes referred to as Dignity Therapy), helps an individual to maintain dignity during a very vulnerable time. It is important to engage both the patient as well as family caregivers during this time. As a hospice provider, it is important to remember that complex dynamics may not change and to be aware of how best to support patients and their families. Ideas for family-focused legacy projects can be complex or simple. Each legacy project can be made to fit the family’s interests to make them more meaningful. Although this article is focused on individuals who are diagnosed with a terminal illness, legacy activities are not limited to people who are facing terminal illness; these activities can be completed by anyone at any time.
Legacy Interventions and Ideas
There are many legacy projects that patients and families can create together which are inclusive of all ages. One idea is to create a Legacy Tree. There are many ways to express one’s creativity. For example, families can write their surname at the bottom of the tree or insert a personal quote. This can subsequently be framed and hung wherever the family would like. Some families have also used this idea to make homemade greeting cards.
- Stamp Pads
- Cardstock or Canvas (if prefer to draw a tree)
- Preprinted Tree Outlines (See link below)
- Using the ink pad to cover their hands, the oldest generation can place their hand prints at the base of the tree to symbolize the “roots”
- Using the ink pad to cover their thumbs, each family member will insert their thumb print on the tree as a “leaf”
Another legacy activity for multiple generations to complete is creating a Family Recipe Book. Many families have loved ones who could always be found in the kitchen. Taking old recipes and transcribing them into a book, an electronic document, or simply filling out recipe cards is a good way to reflect on past family events and memories. Food is a source of comfort to many. For example, discussing Thanksgiving years ago can help both the family and their loved one reflect on their lives and achieve a sense of closure. This can also be done through scrapbooking by adding pictures of holidays or finished products next to the recipes. For examples of recipe books or cards, see Appendix A.
Legacy can range from a tangible, tactile item to having a memory. For example, throwing a party (such as a Pre-Bereavement Party) for a terminally ill loved one can create a lasting memory for all. Family and friends can come together with their loved one to celebrate life. The event can be large or small, catered to each loved one’s needs. Families may rent a venue and invite everyone. Others may opt to go to a restaurant or host a small party at home. Such occasions can be documented with pictures or videos. Scrapbooks may be created to celebrate these memories (see examples below). The Pre-Bereavement Party may be accomplished with or without hospice support.
Other tactile items to celebrate a loved one’s legacy include Life Story books which provide writing prompts encouraging people to describe themselves and their past. This activity can be helpful for the person telling the story as well as the person recording the details. The Life Story books promote reminiscence and allows people to learn new things about one another (Appendix A). This activity can be completed by a hospice provider and patient as a surprise gift for a family member.
All these ideas can be catered to the family’s interests, traditions, and values. Most importantly, hospice providers must understand that each family member’s grief journey is unique. Legacy activities may not change the family’s dynamics, but providing support may help to alleviate some stress and allow families to focus on achieving life closure. Completing legacy projects as a family may open lines of communication and increase feelings of autonomy. One of the most important elements is family spending time together as a family, being present, and enjoying what time is left. Though not an exhaustive list, this article provided a few ideas about legacy projects for families. With creativity, the options are endless.
Allen, R. S. (2009). The Legacy Project Intervention to Enhance Meaningful Family Interactions: Case Examples. Clinical Gerontologist, 32(2), 164–176. doi: 10.1080/07317110802677005
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Mike, H. (2005). Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life. Journal of Clinical Oncology, 23(24), 5520–5525. doi: 10.1200/JCO.2005.08.391
Gregory, C. (2019, April 11). The Five Stages of Grief: An Examination of the Kubler-Ross Model. Retrieved from https://www.psycom.net/depression.central.grief.html
Here are some different tools to help identify materials for legacy. None of these items are being endorsed nor is this author receiving any compensation by sharing these items.
Premade tree outlines-