I had a recent conversation with several families who are in the throws of caring for aging loved ones. These families admirably discussed the issues involved in providing loving care for their parents. Here is one family’s struggle, poignantly stated:
“My sister and I are trying our best to help our mom deal with her multiple, serious health issues . It seems every time we take her to see one of her multitude of specialists, we leave with more questions than answers. There doesn’t seem to be one place to get an answer; we are confused and don’t know where to turn”.
Living life with chronic health issues isn’t easy. According to a new study on family caregivers, millions of family and friends are helping older adults with chronic disease manage medications and navigate the health system. Most are ill-prepared to take on the role; they are sons and daughters, not caregivers. Who else is there to advocate, ask questions and help parents navigate a very complex health care system? Either self-appointed or asked because your mom needs an advocate, there is some work involved. Here are some suggestions and approaches to helping her through the health care crossroads with complex health issues:
First, talk to your family. Have a family meeting. Sit down with your mom. What does your parent want; what is her goal?
Next, talk with a trusted healthcare professional. Engage in the conversation with a list of questions about the health care of your loved one. Where is she along the trajectory of life? What are her anticipated future health care needs? Equally important is capturing the essence of receiving individualized care, with quality and respect to dignity, if those are important elements to you.
In his book Being Mortal, Atul Gawande writes about the culture of providing health care and medicine to older adults in the United States. He says “Medicine has been slow to confront the very changes that it has been responsible for — or to apply the knowledge we have about how to make old age better.”
Being Mortal makes the case for a change in the philosophy of health care. Gawande writes that members of the medical profession, himself included, have been wrong about what their job is. Rather than ensuring health and survival, it is “to enable well-being.” The New York Times
The ultimate take-away from this book is the importance of recognizing when to ask questions, and then act when it comes to the inevitable that we all must face. To die a good death means finding in life, the courage to have caring and frequent conversations with family members and health care providers.
Pay attention to what your mom is telling you.
- If she starts to talk about her life, she may be preparing herself and you to further express her needs and desires.
- If she says she is frustrated by the quality of her day, or complains that it is a struggle to get through each day, she may not be happy about the quality of it and the direction it is heading.
Discuss quality of life issues with a specialist.
As this article in the Huffington Post so eloquently details, a neutral person, often a palliative care professional, can help families engage in conversation that will help all family members tackle the tough subject of care coordination, symptom management and quality of life issues. It’s at this juncture where multiple specialists collide, that their recommendations may interfere with how a person with later stages of chronic disease may want to spend their remaining days. A palliative care specialist is a good neutral resource to see through the varying opinions.
With a palliative care specialist’s help, you will go through a series of questions together to help guide decision-making. One such tool, called “The POLST” (which stands for Physician Orders for Life-Sustaining Treatment), is designed to ensure that seriously ill or frail patients can choose the treatments they do or don’t want and that wishes are documented and honored. The POLST asks how much care a person would want in a variety of situations. Supportive conversations led by a trusted healthcare professional may help families to interpret the questions to find answers about care decisions.
If Mom is hospitalized, be present to advocate for the wishes she made.
It’s not the time to call to see how she’s doing. You need to be there, helping to figure out what is best for her. The people caring for your mom care about her, but its their job to save lives. A nurse eloquently describes what can alternatively happen in this New York Times opinion piece, “The ICU Is Not A Pause Button“:
When I first realized that in intensive care we held lives in limbo more often than we saved lives, I asked a friend who was a more experienced nurse how she felt about that. She said that sometimes a stay in the I.C.U. lets a patient’s family prepare for his death. But while it may soften the shock of death for the family, being in the I.C.U. is unpleasant and bizarre for the patient.
Ultimately, your mom needs you to be present in the hospital to monitor the care and communicate the wishes that she has provided the answers to.
Thinking about having a difficult conversation in anticipation of loss is not easy. Anticipating the last months, weeks, days together with a loved one’s life doesn’t invoke enthusiasm. However, if your mom has an opportunity to gather those around her that love her and has happy, meaningful, quality experiences during the time that is left AND has a supportive network of providers to see that she is comfortable, the hard conversations are worthwhile.