WHEN ADVANCED ILLNESS BECOMES A RELENTLESS MEDICAL BATTLE, more patients – exhausted by the process and ready to surrender, are asking, “what can you give me to help me die?”
Useful replies:
- “Help me understand what you’re going through, that’s led you to want to die?”
- “We’ll do everything we can to address and ease your suffering.”
- “If you’re set on going, then nothing need be given. You need only to stop eating and drinking.”
Are We Living Too Long?
Dying can be hard work, but the evolution of healthcare over the past fifty years has made it harder than it needs to be. Medical technology can keep a patient “alive” almost indefinitely. Often in the closing chapters of advanced illness the burden of continued tests, treatments and procedures has outstripped any benefit to patient or family.
Our human desire for longevity combined with no exit strategy has created a tragic downside. You can see it in any ICU, skilled nursing facility, and in most every family. Few experiences bring this reality home quicker than caring for an aged and bedbound loved one.
“We are the beneficiaries and victims of scientific success.” -Dr. Ira Byock.
Longevity Versus Quality of Life
What can we do to alleviate the situation? Each of us can be clearer and more outspoken about what we want AND what we don’t want in preparation for and during our dying time. If our goal is to live as long as possible, it’s important to say so. The hospital team will oblige. If our intent is to live as well as possible, it’s important to make that clear.
Some difficult leading questions: What tradeoffs are you willing to accept? What abilities, if you were to lose them, would bring you to say, “I surrender.” How aggressive would you want your medical treatment to be, if it gave you a bit more time? Addressing these questions can allow our loved ones and clinical team to help us weigh the benefits of further treatments alongside their burdens and risks of added suffering.
When is it morally and ethically acceptable to allow for death? This is a deeply personal question that begs thoughtful reflection and response. If this question is not addressed, the institutional default is well established and will likely lead to additional treatment. You can count on it. Many procedures keep a person alive even when there is no chance that they will improve or leave the hospital. Prolonged misery and moral distress are too often the outcome.
Attending to Inconsolable Suffering
Please remember that the reasons people cite for choosing VSED are not merely physical.
Last week’s post noted the common denominators behind an interest in VSED: the persistence of unacceptable suffering, the desire to preserve autonomy and control at the end of life, a readiness to die, and the desire to die at home.
While our healthcare system has chosen not to track VSED’s prevalence, it’s safe to say that it’s a relatively small group. Yet there’s a core component of VSED that merits a broader conversation.
The Difference Between Pain and Suffering
Across America today, millions of patients and family caregivers are coping with suffering that goes beyond physical pain. Pain can be relieved by morphine, but not suffering. Physical pain may be the most visible form of suffering and perhaps the easiest to treat. Emotional, spiritual, and existential suffering can be far more difficult to live with and can lead one to the brink.
What is existential suffering? Defined as “being tired of living,” it arises when the meaning and value of one’s life is in question and no longer clear. Psychosocial suffering is often experienced as isolation, separation, traumatic change, and loss. In such a case, the best medicine I’m aware of is the undivided attention of a compassionate friend or loved one.
My perspective has been influenced by discussions with Dr. Yew Seng, a gifted Palliative Care specialist. Dr. Seng has helped me see that underlying the consideration of VSED lies deep suffering. He humbly shared,
“VSED is well-intentioned — to honor the rights of the person, but may miss the point entirely — the issue is about addressing suffering. If the person is considering VSED, it implies that we have not attended adequately to their suffering.”
Another perspective comes from Professor Warren Reich, who defined suffering as “an anguish experienced as a threat to our composure, our integrity, the fulfillment of our intentions… It is the anguish over the injury or threat of injury to the self and thus the meaning of the self that is at the core of suffering.”
What Little We Know About VSED
In 2014, a Swiss research team conducted “the first systematic search and review of published literature concerned with VSED as an option of hastening death at the end of life.” International databases were searched for English and non-English articles dating back 73 years to 1947. Only twenty-nine eligible articles were identified, all from the past twenty years.
The team found alarming gaps of information. At the time of the study, the Netherlands was the only country that tracked how many of its citizens died by VSED. There were approximately 2800 such deaths in the Netherlands in 2014; a country with a population of 17 million people.
That same prevalence, 2.1%, applied to the 2.6 million deaths in the United Sates that same year would have equaled 56,000 cases. Half the prevalence, just 1%, would equate to 26,000 deaths.
The group found no systematic documentation of the physical events that transpire during VSED. Nor did they find documentation of any uniform measures of care. Further, as of 2014, no study had comprehensively investigated patients’ experiences with VSED at end of life. The team concluded,
“The limitations of this review lie less in its methodology, but rather in the availability of relevant literature. As shown in the results, VSED is nearly unexplored.”1
What’s an Appropriate and Compassionate Response?
As fifty-three million caregivers learn about pain management, there’s a corresponding need to both assess and attend to any underlying emotional and spiritual anguish.
What does this person in front of us, who’s asking to die, really want? What might be offered to alleviate their suffering?
Whether clinician or family member, it takes patience and skill to discern an empathic response to the plea, “Just help me die.” Is there a path leading to principled compassion while avoiding personal and moral distress?
With someone considering VSED, a skillful response is to reverently acknowledge the suffering inherent in their situation. The best medicine: to listen well, while being a compassionate, loving companion.
The spiritual, medical, and ethical questions that arise at this crossroads present a challenging opportunity. A thoughtful caregiver or clinician, willing to draw alongside the patient and to accompany them through such a challenging time, can make a world of difference.
What Guidance Would Help Navigate this Polarized Topic?
Consensus has it that VSED is a form of passive suicide YET it is legally and ethically permissible in all 50 States. It is now considered ethically appropriate for physicians to prescribe medications for pain and anxiety relief for those choosing to proceed with VSED.
When we can recognize and discuss our innate fear of death, there will be less call for VSED. In situations where pain and suffering are unmanageable or inconsolable, after all efforts for relief have been exhausted, then the presence of clear protocols to guide the patient, family members & clinical team through a humane dying time are needed, and will be welcomed.
Next Week: A Time of Self Reflection
A Medical Advice Disclaimer
The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.
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Until next week, ‘Safe Journeys,
DSW