Last month the Institute of Medicine released a dense and edifying report on the current and future state of end of life care, Dying in America. Overall, the esteemed, interdisciplinary authors stressed the importance of treating the patient as part of a broader family system and not as an isolated, autonomous being with signs and symptoms of disease to be treated. I fully support this premise based on my experience in hospice care where the patient and family are considered an integrated unit to be served by the healthcare team.
However, while even the average person off the street can usually identify the patient, determining the cast of characters in a patient's family can be challenging for even the most gifted social worker. As the Baby Boomer generation becomes our next group of elders, end of life care will collide with a potentially broad and confusing definition of family. For example, according to the IOM report, family encompasses
blood relatives, in-laws, step-relatives, fiancÚs, significant others, friends, caring neighbors, colleagues, fellow parishioners or congregants, and other people with a personal attachment to the person with advanced serious illness.
With this parade of potential family members marching though my mind, I focused on step-relatives. More than 40 percent of adults in America includes a step-relative in their family. Historically, and as we can infer by the IOM's broad definition of family, scholars have thought that the increase in quasi-kin, such as step-relatives, could add more caregivers to the elder care mix. Will stepchildren step up to the challenge of elder care?
In part, this question motivated the qualitative research in which I've been involved for the past three years. Our sample set of 63 respondents reflected the currently fluid, often ambiguous, changing face of family. Nearly 20 percent (12 of the 63) of respondents included a stepsibling in their caregiving constellation. For example, Kendra* became the primary caregiver for her ex-stepfather in his final months. Throughout her fifty years of life, Kendra had known several stepfathers, but she recalled that she and Jimmy just clicked. They stayed in touch even after he and her mom divorced. They both enjoyed working outside and fixing up the house together. When she was in between jobs, he helped support her financially and connected her to his professional network.
Kendra prided herself on her reliability and loyalty. As her ex-stepfather faced decisions about downsizing and moving to an assisted living center, she helped fix up his house to ready it for sale. She explained that she "was the one who showed up when called." Her presence created some conflict with her three stepsisters, especially when they decided not to come to the assisted living center the night Jimmy died. He had prearranged to be cremated, and they missed their last opportunity to see him before his burial. Kendra brought to the interview a stuffed bear the hospice volunteers had made for her from Jimmy's shirts. With tears in her eyes she confessed, "I considered him my dad." She tried to stay connected to her stepsisters in the year since his death, but her attempts were largely one-sided. Hence, she grieved both him and them. Kendra stepped up for an ex-stepparent, but is she an outlier or more of a norm?
Few scholars have studied the intersection of step-relatives and elder care beyond sociologists, Lawrence Ganong and Marilyn Coleman. Their research helped me better understand the ambiguous and diverse experience that adult stepchildren face as their parent figures age and face serious illness. Ganong and Coleman's book, Changing Families, Changing Responsibilities, reports on thirteen studies they conducted with the general public on the obligations owed to parents, stepparents, grandparents, and in-laws in the aging process in general as well as post-divorce and post-remarriage. Several of their key findings helped frame our data and answer the question: Will steps step up?
A Norm of Reciprocity and Gratitude
Gratitude and reciprocity were named as prime motivators for providing care. For all the respondents in Ganong and Coleman's research, elder care for a biological or step parent was envisioned as an informal debt that should be repaid to a parent who had cared for them as a vulnerable child. We also heard similar responses in our research when we asked about the commandment to honor one's mother and father during a serious illness. Kendra recalled the parental support that her stepfather had provided for her financially and emotionally. She saw herself to be in a reciprocal care relationship.
Length of Relationship Matters
Ganong and Coleman found that overall connections are weaker when a parent remarried later in life, because "the adult children do not think of themselves as stepchildren," they do not live together, and they have less time to bond and create shared familial norms. Kendra proved to be an exception to that trend, since her stepfather and mother married later in life, but the warmth of their relationship compensated for the short length of time they were acquainted. However, although she saw her ex-stepfather as a replacement for the father she did not know, her stepsiblings did not recognize her as "true kin," at least not after the divorce, which would became apparent in disagreements they had over his burial as well as her inability to stay connected to them after his death.
Care Provided Based on Ability of the Adult Child
Ganong and Coleman note that regardless of relationship to the elder in need, respondents in their surveys stressed that caring for the elder should not come at the expense of caring for the adult child's own spouse and/or children. This finding may be critical to the future financial viability of providing elder care since divorce, and specifically late in life divorce, holds a negative financial impact, thus increasing the potential need of tomorrow's aging population. Brown and Fen report that
On average, older divorced Americans have only 20 percent as much wealth as older married couples. And the net wealth of those who've been widowed over age 50 is more than twice the wealth for what the researchers call the "gray divorced."
For Kendra, job security, geographic proximity, and not having any children of her own, enabled her to devote more time, energy, and money to the care needs of her ex-stepfather, whose own financial situation proved to be precarious as an aging, divorced and single man.
The Power of Closeness
Ganong and Coleman found that overall the main reason any child or stepchild took on the burden of care for an elder was related to quality of their relationship. Despite geographical distance, acuity of need, level of ability, and length of relationship, if the quality of the relationship was deemed warm or close, the grown child offered care. Hence, some steps — like Kendra — did step up to help care for their aging stepparents, and the reason they did was tied to a primary motivator for any grown child caring for a parent: the power of closeness.
So, will steps step up to the challenge of elder care? The answer could be yes, but depends heavily on the quality of their relationship, which worries me. End of life care is already a stressful and taboo subject. Diversity in family structure puts increased pressure on the character of the individuals involved, like Kendra, her ex-stepfather, and her stepsisters. Our societal challenge remains to find healthy professional, medical, legal, and religious policies and procedures that can help foster high quality relationships in families before a crisis occurs but also can protect people from the worst versions of themselves when they do. The future of end of life care may demand more quasi-kin in the form of paid caregivers and sitters to serve as a safety net for poor quality relationships. If not, greater ambiguity and isolation for all involved will follow.
We will need help stepping up.
* All names have been changed to protect the identity of the respondent.
This article originally appeared here.