Working for the last couple of decades with people who are at or near the end of their life has been a remarkable experience. It continues to be both inspirational and illuminating. Many of those clients put forth heroic efforts to survive as long and as well as possible, by:
- making sweeping dietary changes
- de-toxing their home environment
- taking supplements
- getting acupuncture
- going to therapy
- practicing stress management
But there are times when those same clients who have ”moved heaven and earth”, so to speak, get tired of fighting. Some lose hope, while others have a change of heart, perhaps developing a longing for the comforts of their previous lifestyle. I am not here referring to the occasional bad day when the interventions seem cumbersome or overwhelming. Rather, this article refers to times when a subtle shift in belief occurs within the ill person which manifests through words or actions of resistance or rejection.
When this happens, those of us providing support (friends, family, health care professionals) are faced with a tough choice: do we embrace this change of direction, or do we rigidly insist on the “rightness” of previous interventions?
Anger and resentment frequently flare up at times like these. Why does this happen?
Let’s backtrack for a moment.
We have all lost people we care about, and that statement alone points to the underpinnings of the situation and its difficulty: loss. Those who are left behind must learn to deal with their feelings of loss of one who was dear to them, missing them deeply, mourning their absence. We know what these things feel like. We wish to avoid them again if at all possible. As a species, human beings have a strong distaste for pain. And scenarios surrounding this ultimate loss are among our most painful.
So when the ”support team” sees the patient/loved one disconnecting from the very interventions which have offered hope, we can feel betrayed. This feels deeply personal. We can begin to question whether our loved one wants to be with us as long as possible. After all, making the choice to discontinue medical/holistic intervention seems to send a message of readiness to die, not a desire to live. That message appears totally inconsistent with all the hard work that went into the sweeping changes previously embraced. Frequently, families are confused or perplexed.
Dr. Elisabeth Kubler-Ross was once asked about “sacred inconsistencies” such as the fact that she was still a smoker, while espousing a healthy lifestyle. Her answer was this:
“I think that as you evolve spiritually, automatically your body tells you what is acceptable for your body and what is not….
I survive. Eventually, when my body tells me it’s time to quit smoking, I will quit smoking. But if somebody tells me you can’t smoke, you can’t do this, you can’t do that, the aggravation of this constant nagging is, I think, more damaging to my health than if I listen to my own body and live accordingly.”
We don’t have to look much beyond our own mirror to see that sacred inconsistencies are part of every human existence. If we learn to respond to these from our best, most spiritual self, we will choose to respond to inconsistency with compassion. Our compassion around freedom to choose contributes directly and powerfully to the ill person’s sense of dignity.
Each person has the right to choose, not just how they want to live, but also how they want to die. All choices have emotional fallout; that is, they affect others. This is especially the case when loved ones make choices we do not agree with, choices that affect us personally. When our dear ones suddenly seem to change the rules on us, here are some suggestions:
- Remember that they may be grappling with feelings that they are abandoning their loved ones by retiring from their fight for life. Don’t contribute to those feelings by projecting personal fears of loss onto them.
- Don’t feel that your support has been in vain: all the contributions you made to lifestyle changes were proof of your love for them. When survivors look back on a loss, those who can look back with no regrets fare much better through the grieving process than those who wish they had done more.
- Recognize the limitations of the emotional state of the ill person. Advanced disease, chronic pain, & heavy medications all limit the ability of the patient to countenance excessive or negative emotional input from friends and family.
- Discontinuation of interventions (other than palliative) can be viewed, not as a desire to die, but as a desire to live as peacefully and with as little struggle as possible for the time remaining. We can contribute to that peace by respecting their right to make the choice of how to spend their last weeks, months, or days.
- Some experience a crisis of faith near the end of life. Patient, kind, considerate acts will help reassure the loved one at a time they need it the most.
- Recognize your own need to express your feelings and be heard, but do so in a proper, constructive venue. Support groups for caregivers, a therapist, or a friend not involved in the situation are good options for accessing necessary support for yourself.
- Ask your Primary Care Doctor about Hospice. Their experience in dealing with eventualities can be of tremendous comfort to patients and their families.
- None of us can stop people from dying. But we can give them the tremendous gift of sustaining their dignity as they face the future by lovingly supporting their choices.