Making Decisions During a Crisis

Sandy Padwo Rogers

“You decide.”

How many times have you said these two simple words? How often have you felt that you just didn’t have the energy or the inclination to choose?

When faced with a decision that’s not significant (where to go for dinner, what movie to rent), allowing someone else to take control is often the easiest thing to do. But what happens when you are faced with a crucial decision that will affect the future health and well-being of your loved one and yourself? What happens if this decision must be made during a crisis? For family caregivers, having to make a decision during a crisis is not a matter of “if,” but “when.”

When NFCA first explored this subject a little more than a decade ago, a number of professionals were consulted and important themes emerged:

  1. There are things that all of us can and should do to be ready for an emergency. But no one can truly prepare for a crisis. If we could, it wouldn’t be a crisis. 
  2. There is almost never a “right” answer. Faced with a set of not-so-good choices, we do the best we can. We need to accept the decision and move on.
  3. Crises take a toll on caregivers as well as on the care recipient and the rest of the family, so it’s important to think about the impact of the decision on everyone involved.

Realizing the relevance of this topic to all family caregivers, we decided it was time to revisit these themes with a new set of experts. Interestingly, the experts we spoke to this time around were all in the midst of or had recently experienced their own caregiving crisis, making their advice that much more germane. The good news for all family caregivers is that there are things you can do to prepare for and ease the decision-making process for yourself, your loved one, and your family.

Plan Ahead

“I’m a big fan of planning,” says Barry Jacobs, PsyD, director of behavioral sciences for the Crozer-Keystone Family Practice Residency Program in Springfield, Pa. “Family caregivers need to remember that caregiving is not a static enterprise; it’s a fluid enterprise. They have to be willing to look down the road and to explore contingency plans. The more people have these conversations about what’s coming down the pike, the more they will be able to prepare — financially, legally, logistically, and emotionally.”

As part of the planning process, Dr. Jacobs recommends that family caregivers identify their strengths and weaknesses, in particular with regard to how they respond during stressful situations. For example, some people panic during a crisis while others might withdraw. Some stay calm, cool and collected during the emergency itself but then fall apart later on. By recognizing your own characteristics, you will be better able to plan for any future emergency. This may mean that you ask someone you trust to be there for you should an emergency arise. Keep in mind that calling on others to help you navigate a crisis situation doesn’t mean you are relinquishing control. “You don’t lose your status as the primary caregiver just because you are willing to accept help during a crisis,” says Dr. Jacobs.

When dealing with a medical emergency, Dr. Jacobs recommends designating someone you trust to act as another set of ears to ensure that someone objective hears what the doctors say. “When anxious, people don’t take in information,” says Dr. Jacobs. Someone who is not emotionally attached to the situation should be given the assignment just to listen and to help the family digest the information.

It’s also helpful to begin an honest conversation about your loved one’s condition with all the members of the family before a crisis occurs. “When family members meet, each member brings a different strategy to the table,” says Sara Qualls, Ph.D., a psychology professor at the University of Colorado who often works with families during a crisis. “This often results in the family members questioning each other’s motives. It’s important to begin these conversations with a discussion about shared values and each family member’s hope for the care recipient as well as the caregiver. By focusing on a shared set of values, good decisions can be made.” 

Finally, while you can’t predict when a medical emergency will occur, you can keep a current medical history, medication list, and other important medical and legal documents available so that they can be easily accessed and shared with emergency personnel. Having this information at your fingertips not only helps the treating medical team, it gives you more credibility with all those who are caring for your loved one.

Ask Questions and Share Information

It’s important to give yourself permission to ask as many questions as often as you need. If you are in a hospital setting and you aren’t comfortable asking questions at your loved one’s bedside, tell the doctor you will need to speak with him/her again. Find out how to reach the doctor and if someone else is available to help you understand. “Information processing is affected by your emotions,” says Dr. Jacobs. “It’s important to ask for a mechanism for multiple conversations. At the very least, the family caregiver should speak with the nurses, who may have more time to explain the situation and to answer questions.”

"It’s so much easier to make a decision when you know that you have accurate information and realistic expectations,” says Dr. Qualls. “You need to make sure you have all the data before you can make the tough choices. Then you need to share the data with all those who may be involved in the decision-making process. Family members often don’t agree because they don’t have the same information. Sharing the data goes a long way toward solving family conflict.”

Let the Facts Guide You While You Temper Your EmotionsYaffe Crisis Text Box

Mark Yaffe, M.D., associate professor of family medicine at Montreal’s McGill University and St. Mary’s Hospital Center, identifies dissension among family members as one of the greatest challenges that family caregivers face when a crisis occurs. “A common scenario that I encounter is when there is a family caregiver on-site and heavily involved, while others are out of town and less involved, or not involved. Generated by a crisis or their sense of guilt, these lesser-involved family members then try to impose their sense of perspective by coming onto the scene during the crisis.”

Dr. Yaffe explains that when a crisis occurs, the reaction of each family member is influenced by his/her own unique dynamic with the person who is ill. Subsequently, family members are often not on the same wavelength in terms of how they think the situation should be handled. “Family members need to remember that the decision they should be making is what is best for the patient, not what is best for a particular family member,” says Dr. Yaffe.

How can you ensure that a decision is not made based solely on emotions? One strategy Dr. Yaffe recommends is to approach the decision-making process initially by trying to apply some degree of structured logic, rather than relying uniquely on emotions. For example, gather information on as many options as possible and lay them out visually on a flow chart or decision tree. Follow the tree branches sequentially and attempt to understand the rational consequences that go along with a decision in any particular direction. At the completion of this analysis, take time to allow yourself and your family members to express emotions and feelings: Am I ready to make this decision? How do I feel about this? Which option feels better? Can I live with this decision? In the course of this analysis, ask whether you are achieving a satisfactory balance between logic and emotion.

“Whose problem is it?” This is a question Dr. Yaffe believes all families should ask themselves when making a decision in a crisis, especially if the family members are agonizing over the decision. Are family members bringing their own emotional baggage to the table? Are they being honest with themselves and each other? Dr. Yaffe finds that the problems family members experience are often not the patient’s but their own. By talking openly about their individual issues, family members are better able to cover all the bases and minimize guilt over the decision later on. These discussions can also bring family members closer together.

Both Dr. Yaffe and Dr. Jacobs strongly recommend that the care recipient’s primary care physician be notified of the emergency. This physician may be able to help explain the situation and to make recommendations with more knowledge of the consequences of a particular decision. Family members must also educate themselves about and be able to verbalize their understanding of the specific condition or disease, the course of the disease, and the true medical state of the patient. “I spend a lot of time explaining the various pathways of a condition or illness so family members can make decisions that are as guilt-free as possible,” says Dr. Yaffe. “It’s a combination of understanding the medical alternatives and their consequences as well as understanding our emotions. What can we live with and what can’t we live with? If the care recipient cannot be involved in the decision-making process, then family members must also consider what he/she would want.”

Don’t Second-Guess

“It’s not possible to be a family caregiver and not experience twinges of guilt,” says Dr. Qualls. “Just like with parenting, caregiver guilt is part of the package. Every day you just try to respond the best you can. Be honest about what you value and be clear with your loved ones about your choice; then ask them to accept your decision even if they may not agree with it.”

Once a decision is made, accept that you did the best you could and move on. “Everyone is a Monday morning quarterback, regardless of what decision you choose,” says Dr. Jacobs. “There are no perfect decisions; there’s no ‘right’ way. You make your best judgment and you try to learn. It’s important to cut yourself a little slack. No one does it perfectly.”

Recognize the Toll the Crisis TakesSchulbaum Crisis Text box

“A crisis often occurs because of a change in the care recipient’s impairment or an increased awareness of a problem,” says Dr. Qualls. “In the case of an elderly individual, the patient often doesn’t recognize the scope of the impairment, forcing the family caregiver to take on new roles within the relationship. This role shift often must take place without the care recipient’s agreement and the tension involved in a decision of this magnitude takes an emotional toll on the family caregiver. It’s easier on everyone when other family members help make this decision.”

A crisis can also occur when the care recipient becomes so focused on himself/herself that the needs of the family caregiver are not heard or ignored. Dr. Yaffe often counsels family caregivers who are feeling unappreciated, isolated, and even abused. “If you are not being treated appropriately, you owe it to yourself to be honest with the care recipient,” he says. “It’s OK to say something like, ‘My role as your caregiver is a difficult one. I accept this, but it is putting my own health at risk, which will then be bad for both of us.’” Dr. Yaffe admits that these are not easy conversations to have and recommends the use of a third party to help thoughts be expressed if the individuals involved are unable to be open to each other about what they are feeling. He adds, “Family caregivers are dealing with grief, so seeking the services of a grief counselor is not inappropriate.”

“Guilt and grieving are inevitable,” says Dr. Qualls. “These feelings will come and go. It’s helpful when someone is there to help walk with the family caregiver and to validate these feelings. When the intensity of these feelings takes you toward depression, however, it’s time to get professional help.”

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