Dear Carol: My mom has lived for years with multiple health issues, including two rounds of cancer treatment. She's now 79 and suffers from severe bowel and digestive disorders, lung disease and more. Considering her quality of life, she’s very cheerful and reasonably happy, but she is also realistic and she’s determined not to drag things out as her health continues to deteriorate.
Her brain is sharp. She has a health directive and she’s aware that she can get a do not resuscitate order. She also knows that life-extending measures can be taken by emergency technicians and others before the health directive can be read. We both wonder what else can be done to assure her that she won’t receive a feeding tube, in particular, or other extreme measures. She can’t relax until she knows that she’s done everything to make sure that this doesn’t happen. — YT.
Dear YT: I’m sorry about your mother’s poor health. She’s obviously a fighter to have survived so much.
It makes sense that she wants to take charge of her own future so she can determine how much more she wants to continue to fight for what sounds like a decreasing quality of life. Your mom’s correct in that a do not resuscitate order is not always enough when it comes to end-of-life emergency care because that only covers cardiopulmonary resuscitation.
Additionally, as you noted, a health directive may not be accessed in time to deal with an emergency situation since emergency personnel need immediate instructions if they are to alter their standard approach to care. Most states, but not all, are now recognizing a form called the Physician Orders for Life-Sustaining Treatment (POLST), which can be downloaded free from https://polst.org/ as well as other sites.
This form tells emergency personnel and physicians whether or not a person wants CPR; whether they'd want to be taken to a hospital and, if so, under what conditions; what life-prolonging interventions they would want, if any; and whether or not they'd want a feeding tube. If they say yes to a feeding tube, they can specify how long they’d want this treatment to last. Comfort care, medicine or other ordinary care is not withheld.
The POLST must be signed by a doctor, which shouldn’t be a problem in your mom's case. Once signed, the form should be printed on brightly colored paper and copies posted in places that would be obvious to emergency personnel. The refrigerator is one place that they will generally look, but she’d probably want to post copies around her home just to be sure that the form isn't missed. Make certain that a copy is in each medical file, as well.
This hasn’t been an easy road for either of you, YT, but you and your mom seem to have the kind of relationship that allows her to be honest about her end-of-life wishes. She obviously knows that she can count on you to follow through which is invaluable to her. I wish you both well.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.