Tuesday, February 9, 2016

Life-and-Death Differences: How do I know whether I need Hospice, Palliative Care, Terminal Sedation, or Physician-Assisted Suicide?

Doesn't it seem like there should be
at least one more option than this?
Those of us who discuss dying on a regular basis sometimes forget that terms we use very specifically can have a much broader range of meaning for most other (i.e., “normal”) people. For example, grieving, mourning, and being bereaved are often used interchangeably as synonyms (i.e., words with essentially the same meaning). Is it helpful to identify the particular definition of each one? I believe it is, especially for those who are experiencing all three simultaneously, and trying to find a safe course to navigate through them. Technically, then, but briefly: Bereavement = the condition of having experienced a significant loss. Grief = the involuntary reaction we experience when we are bereaved. Mourning = the voluntary actions we take that help to process our grief.

Vocabulary for the Dying
If the terms describing the experience of loss and its aftermath are important to distinguish from one another, then it is even more important to do so when the terms apply to our own experience as an imminently dying patient. Most of us would like to know only what it means to have symptoms, receive a diagnosis, follow a course of curative treatments, and be restored to health. And yet, the reality is that most of us, either in our own life or the lives of those closest to us, will hear some form of that dreaded sentence from our doctors: “I’m sorry. There’s nothing more we can do to make you well.” What are we supposed to do when “there’s nothing more we can do?”

The important distinction, even when you are diagnosed with a terminal disease, is that while there is nothing else to be done that will cure you, there is far more that can be done to ensure that you continue to live the best possible life until that terminal disease (or some other cause) ends your life. The next step, especially for those whose terminal or chronic illness is likely to end their lives within six months or so, is usually a referral to “Hospice.”

Well, this is a third option, but it's not exactly
what hospice care is all about.
Hospice: What it is, and why.
The best definition of hospice says more about what it is not than what it is. “Hospice exists not to prolong your life, nor to hasten its end, but to help you live until you die.” When curative measures are no longer possible, or desirable (since some patients find the treatments more difficult, debilitating, or even deadly than the disease), hospice can provide patients with symptom-management and pain relief throughout the natural, physical process of dying. But just as importantly, and sometimes more so, hospice provides support for the mental, emotional, social, and spiritual needs of the patient, their family, friends, caregivers, and others. The focus on a patient’s personal preferences includes determining how best to provide service in either the patient’s home or in a medical facility. The support for the many peripheral needs can include discussions with insurance providers, referrals to funeral planners, and coordination with the appropriate faith communities for spiritual support as well.

Why am I so concerned that you understand what hospice is and does? First, you or someone you know will likely need hospice services someday. Second, there are other alternatives becoming more popular, primarily because people are unaware that hospice care is available to them. And third, I want you to understand what hospice is and does because I hear too often, “If we’d only known everything hospice could do, we would have called you in much earlier.” Sadly, I also have to hear people say, “I wish we’d known about hospice when our loved one was dying.”

At least when it's prescribed in California,
it still has to be suicide, not homicide (so far).
“Turn Out the Lights; the Party’s Over”
To fully understand what hospice is and does (and isn’t and doesn’t), there is another pair of terms that are often confused (Palliative/Terminal Sedation and Physician-Assisted Suicide), and a third (the Dual Effect) that needs to be clarified as well.

These distinctions are very important, especially for those exposed to recent references in popular Christian books. In Rob Moll’s The Art of Dying, he quotes from Dallas Willard’s The Divine Conspiracy (before repeating the phrase as his own perspective) to portray hospice as employing “the widespread use of heavy sedation.” No wonder, then, that some patients, friends, and family members imagine that once hospice service begins the patient’s conscious existence becomes a thing of the past. But in actual practice, even what is called the “dual effect” of a patient becoming unconscious (or dying) as a side-effect of sufficient doses of pain medication is rare. When it does occur, it results from attempts to relieve distressing symptoms and/or unbearable pain. Further, it is almost exclusively occurring at the very end of a terminal illness’s progression. And yet, even when diseases have done nearly all they can do to us, hospices routinely accommodate the preferences of patients who, willing to endure higher levels of pain than others might, want to stay as awake and alert as possible. This is sometimes a temporary preference that allows, for example, one last visit with distant relatives or friends, and sometimes a distinct desire to experience as much as possible of the life remaining to them.

But there are, occasionally, physical symptoms that are “intractable.” Sometimes the extraordinary panoply of medications and techniques available are unable to provide the level of symptom management and/or pain relief that the patient desires. Palliative/Terminal Sedation (usually referred to as either Palliative Sedation or Terminal Sedation) is necessary for those patients who can only be made comfortable by rendering them unconscious. This is “palliative” in that it is a means of relieving pain and/or other symptoms. It is “terminal” because, unless there are measures to provide nutrition and hydration (food and water) artificially, the patient does not regain consciousness. Death occurs within a matter of days once there is no further fluid intake.

Is Palliative/Terminal Sedation, then, a form of Physician-Assisted Suicide? Some would see any claim to a difference between them as merely splitting hairs. In practice, however, there is a vast difference between the prescription of pain relief that may result in diminished or lack of consciousness (as can be a side-effect of effective Palliative Care), the prescription of unconsciousness as the only means of relieving pain (Palliative/Terminal Sedation) and the proactive ending of one’s life in order to preemptively avoid whatever symptoms may or may not accompany the progression of a terminal disease (Physician-Assisted Suicide).

So, we have made some progress.
(In grammar, punctuation and spelling, too, it seems.)
One Last, Unfortunate Distinction
While all hospices provide palliative care (relieving pain and symptoms), not all palliative care should be confined to hospice. There are patients for whom symptom-management and pain-relief should be provided, even as they pursue curative care. This is not currently the case for most patients. There are hopes for change, and some signs of progress. But currently both public and private insurers are hesitant to cover palliative measures for non-terminal patients. Still, palliative specialization in the medical community continues to be developed in anticipation of one day overcoming the legislative and regulatory roadblocks to a more enlightened public policy.

This bears careful attention as the push toward suicide continues to grow (as with California’s recent passage of the End of Life Options Act). If our society continues to advocate for hastening the deaths of the terminally ill, we are morally obligated to allow all patients the option of pursuing a cure for their disease and the restoration of their health. Unfortunately, patients too often abandon that curative care due to the debilitating side-effects or devastatingly difficult life-adjustments necessitated by otherwise effective treatments. As the proponents of Physician-Assisted Suicide disregard hospice, offering instead a “get well or die” paradigm, every opportunity should be provided to those patients who would seek to get well, were they not asked to endure torturous treatments unmitigated by palliative care.

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