My friend’s grandmother had always lived a purposeful life. She often said that she intended to approach the end of her life with as much control and purpose as she could. There were certain circumstances where Rachel knew exactly what kind of medical care she wanted. She didn’t want to undergo prolonged suffering with risky or aggressive treatment, or to be kept on life support when death was inevitable. When she was diagnosed with metastatic cancer, a terminal illness, in her mid-80’s, Rachel felt strongly that she’d prefer to die peacefully rather than fight a difficult battle to potentially buy herself a few weeks or months. She wanted to use the time she had left to say goodbye to family and friends, without having to endure painful side effects from drugs or treatments that may cause mental confusion, fatigue, and more suffering. Rachel is among the growing number of older adults who are not interested in only the number of years of life that we have; Rachel is interested in the years of healthy aging. She wants to end the story of her life in a conscious way, rather than spending precious time in an acute hospital attached to medical equipment, separated from family and friends. Rachel believes that endings matter.
After hearing from her doctor about the realities of her advancing illness, Rachel wanted to spell out exactly what she wanted to avoid (e.g., heroic medical treatments, feeding tube, ventilator, unnecessary suffering), and also what she wanted (e.g., hospice care, followed by cremation of her body). Rachel’s doctor suggested she specify her wishes in an advance directive.
Unfortunately, as is sometimes the case, some of her family members weren’t on board with her refusing treatment. Her sons didn’t want to let her go so soon: the idea of losing their mother was becoming all too real, all too fast.
Disagreements about the decisions outlined in advance directives are common among families, but understanding the importance of an advance directive, and where the disagreements stem from, helps older adults and their families thoughtfully approach end-of-life care.
What Advance Directives Entail
Advance directives are useful for anyone to have, no matter their age. However, they’re especially useful for older adults who choose to make their medical wishes clear. An advance directive is a legal document in which a person describes actions that they wish to be taken if they are no longer able to make decisions themselves, due to illness or cognitive impairment. In this document, your loved one states their preferences for the amount and type of treatment in life-threatening situations. If your loved one is ever unable to speak for themselves, doctors and family members refer to the advance directive.
There are typically two aspects to advance directives. The first part is creating a living will. This is a written document that explains your loved one’s instructions for treatment measures (if any) to be taken for different health conditions. The second part is giving another person medical power of attorney. This role is usually given to a trustworthy family member or friend who knows your loved one well, and it gives them permission to make decisions and speak on their behalf. Both aspects of an advance directive are there to ensure that your loved one’s voice will be heard, and their choices respected.
Understanding the Roots of Family Disagreement About Advance Directives
While the preferences expressed in an advance directive are for your aging loved one to choose, differing opinions from family members can sometimes create a tumultuous disagreement about those choices. Many families benefit from having a series of discussions about this important decision, so they can understand and support their loved one’s choices.
These discussions occur between initial diagnosis and death, but should first begin with the older person’s physicians and other health care providers. Your loved one’s experience of their disease is an important starting place for any decision-making process, and they should have a discussion about treatment options with their physician first. Physicians and health care providers can engage the older person regarding the quality of communication that they have with family members, before engaging family in a challenging conversation.
Any discussion of end-of-life can feel strange, confusing, and disturbing to the older patient and their family members, as these topics are often emotionally charged. Whether you are the doctor, the health care professional, the patient, or the family or friends, none of us are really sure how to face mortality. The fact that people supporting the aging adult may disagree with the decisions being discussed by the older patient doesn’t signify failure. All of us are trying to figure how to live and die a meaningful life. Disagreements will occur. What we must do is continue to communicate together, and understand where many of our emotional responses come from.
According to Atul Gawande, the author of “Being Mortal,” there are two unfixables in life: Aging and death. To anticipate the aging and death of a parent or relative is not an easy process. While some authors argue that adults who lose their older parent for whom they had been a family caregiver respond quite well to the death, many other professionals see the event differently. My observation is that many adult children have a strong, emotional attachment to their older parent, and wish to do all that is possible to extend their life. If additional surgeries or chemotherapy treatments might extend the life of an ill parent, the adult child may influence their parent to accept the medical interventions.
Some adult children want to shield themselves from thoughts of death and of their own mortality. The complex feelings of the adult child or children jeopardize the ability of the older parent to make rational decisions, and these disturbing feelings may cause the child or children to temporarily oppose a loved one’s desire to stop medical treatment. Family members who are especially close to their aging loved one—or, conversely, ones who have regrets concerning their relationship—might be particularly vulnerable to strong feelings of anticipatory grief. Having a series of compassionate discussions with your loved one, family members, and possibly a counselor can help inform respectful decisions during this phase.
You might notice some family members refusing to engage in the discussion about your loved one’s treatment choices. They might even be completely unwilling to spend time considering it. Denial is usually a coping strategy for dealing with something they can’t handle at the moment. Adult children who are caring for their parent, work, and are raising school-aged or older children may experience additional high stress in their lives. Denial protects them from having to talk about a topic that causes further discomfort. If you are a healthcare professional or a friend or family member, try offering them information, but don’t push for a response. Inviting them to talk with a trained counselor can also help them see things more clearly.
If a family member has entered into acceptance, they’ll likely be open to their loved one’s medical choices. Family members with close relationships to their aging loved one will often have started this process some time ago, and thus are better emotionally prepared for the realities. This can create conflict if they disagree with other family members who haven’t yet reached this phase. However, this type of conflict should be resolvable through family meetings, compassionate communication, and possibly a third-party moderator.
Regrets over the past can lead to guilt cropping up during difficult times. Family members might feel they should have done more to help their loved one in the past, or feel responsible in some way for their medical condition. Guilt can manifest as anger, as well as an inability to compromise in the moment. Working through this with counseling can be very effective.
Why Family Dynamics Play a Big Role
Family dynamics also affect each member’s response and reaction to a loved one’s medical treatment choice. Consider each family member’s personality, strengths and weaknesses, position in the family, and their role in caring for your aging loved one. All these facets will impact their response to difficult treatment decisions. When your aging loved one makes a choice about treatment, some family members will step into a leadership role, and others will need time to process emotionally. Each situation is inherently different.
How to Navigate Conflict When Family Members Disagree
When creating healthy communication amidst these shifting family dynamics, it’s helpful to keep in mind that ultimately the medical decisions are up to your loved one. Except, of course, if they’re unable to speak for themselves—in which case, the choice rests with whomever holds medical power of attorney. One of the best ways to reach a mutual understanding on tough subjects like this is through family meetings: and while this tried-and-true approach can require patience and understanding, it’s worth it. Fortunately, there are a few tips that will help ensure all family members are both heard and respected.
- Try holding meetings at different family members’ homes, or at a neutral territory like an outdoor park or coffee shop. If a family member is strong-willed, holding the discussion in a neutral setting is preferred.
- Use conscious communication, and encourage people to choose their words carefully. Instead of making generalized, all-or-nothing statements, identify specifics about the particular situation and how they relate to your feelings. Instead of saying, “This is a terrible idea,” you might say, “Mom having a DNR makes me feel sad and scared.” The latter invites further constructive conversation, while the former offers nothing more than a reactive opinion. If one person can set the tone for empathy and compassion, others will be more likely to follow their lead.
- Make sure that everyone gets their time to talk. You might use an object that gets passed around from person to person; whoever’s holding the object gets to speak without interruption.
- Before you get into heated arguments about your loved one’s course of medical treatment, encourage everyone to get in touch with what emotional phase they’re in (grief, denial, etc.). By acknowledging how family members feel, new ways of thinking may emerge.
- Delegate one person as moderator for the discussion. It’s vital that people are allowed to disagree and share their opinion—so long as it’s done respectfully, and the conversation is guided back to the primary goal.
- Bring in professional help. Social workers, family counselors, geriatric care managers, or elder care mediation experts are trained to handle situations exactly like this. If your family is struggling on their own, it can be worthwhile to ask for professional help to reduce conflict.
While dealing with the eventual loss of a loved one is difficult, there are ways to handle it that can bring your family closer together while offering your loved one the support they deserve. No matter what conflicts you encounter, there are always solutions to be found; investing energy into understanding your loved one’s choices can make all the difference.
If you want additional support navigating your loved one’s choices about medical treatment and end-of-life decisions, the compassionate staff at Institute on Aging is ready to help. Don’t hesitate to contact us anytime.