End-of-Life Decision Making

As my parents approached the end of their lives, their situations were different. However, both of their deaths required difficult decision-making, which involved my sisters and me as caregivers.

You may find yourself facing sudden end-of-life situations with a care partner, or end-of-life may come slowly. Are you prepared for tough decisions that involve not only yourself but also another person?

Palliative Care

My mom had cancer but was in remission. Three years later, it came back with vengeance. The end came within three weeks. While hospitalized, my mom needed to make choices regarding palliative care, and then not long after, hospice. Fortunately, when the hospital staff realized she was not going to recover, they provided guidance, and Mom was lucid enough to understand the situation and make her own choices.

Palliative Care can be used during any stage of a serious illness. It helps patients cope with the side effects of medical treatments, fears, and caregiver stress. Palliative care works by relieving symptoms, often improving a person’s ability to tolerate medical treatments and possibly recover. Mom was in palliative care for a brief time.

The palliative care team can help families make difficult medical decisions, taking time to discuss pros and cons. However, it is up to the individual patient, or the health care agent authorized to make decisions for them to decide on the path of care. (If there is no health care agent, as discussed below, these decisions may be taken out of the family’s hands.)

Hospice Care

Hospice Care requires a doctor to certify that a patient is nearing the end of life and has a life expectancy of six months or less. Of course, six months is only a “best guess” milestone as no one knows exactly when death will come. My mother-in-law was put on hospice care, then she improved, was removed from hospice, and lived quite a while longer.

Both my parents were in hospice care for less than a week. My mom made her own decision to accept no more treatment, while we decided on my dad.

Hospice care can be provided in a hospital, a dedicated hospice care center, or even at home. The goal of hospice care is to make the person as comfortable as possible. Likely, most medications other than pain relief will be discontinued. The hospice team provides pain and symptom management, emotional support, spiritual care, and assistance with personal tasks such as bathing.

Take the time to learn the meaning of these terms in case you are faced with these decisions.

When the End of Life is Looming

We tend to think end-of-life decisions happen at a single point in time; do we turn off the life-support machine if the person is brain dead? Or do we leave it on for a time?

When my dad had advanced dementia, I realized the decisions could be complex. They included questions such as:

• Do we use diagnostic tools such as X-Rays, MRIs, etc., when the end is near?
• Should antibiotics or other medications be discontinued? Does it make a difference if the medication may extend life or if it is used to alleviate discomfort?
• Would a feeding tube be appropriate?
• When should hydration be given intravenously or by mouth, and when should it be discontinued?

These decisions can be heart-wrenching. I was grateful for the guidance of medical personnel when we were faced with these tough questions with Dad. And although the nursing home provided excellent care, we knew Dad would not like to live in a near-vegetative state.

Do you wonder how to approach end-of-life issues with your care partner? A necessary step for peace of mind is to ensure they have executed a Health Care Directive, which includes a health care agent (and an alternative) to be the decision-maker in case of incapacity. Every state is different; you can typically find the appropriate form on your state’s website or consult an attorney. If you are a country other than the U.S., learn about your laws.

It is also helpful to know if the person has a post-death plan and if it is paid for. A cremation, burial, and memorial service can all be expensive, and it is easy for us to make poor decisions while we are grieving. If a plan is in place, do you know where to find these documents?

Take the time to plan ahead and know your care partner’s wishes while they are clear-headed. It could save your family from disagreement and heartache at an already difficult time. You will never regret spending the end of your care partner’s life loving and supporting them, rather than in crisis.

Visit www.gracesmessage.com for caregiving and grief resources.