[EDITOR’S NOTE: Craig Phillips and I have joined together to provide this post. I begin by trying to establish a context through which Craig’s experiences can be better understood and appreciated. – LWH]
The more I have tried to understand pain management at the end of life, the more I have realized how complicated it can be. The notion that everyone needs only adequate doses of morphine misses the complexity of both pain and its treatment, as well as the directives of patients.
How well pain is controlled at the end of life depends, in part, on how well pain is assessed. Pain comes from a variety of sources, including musculoskeletal, neuropathic, and visceral (from organs and associated structures within the body). Related to pain are symptoms like breathlessness or shortness of breath, fatigue, nausea, vomiting, constipation, confusion, anxiety, fear, agitation, and delirium, to name some of the more common conditions.
Appropriate medical responses to all possible conditions can be difficult to determine. Treatment of one pain source may affect other conditions. There may be trade-offs for the patient. For example, it may not be possible to remain conscious, if that is the patient’s choice, and achieve adequate pain and symptom control. Languishing in a comatose state may be the only way to achieve the peacefulness that the patient wants.
The literature suggests that patients near the end of life see pain and symptom control as essential to what they view as a dignified death. Research published in Nursing Outlook and accessible at NCBI offers this analysis:
Unfortunately, pain and symptom management is often inadequate, even for people facing the end-of-life transition with palliative and hospice care and can affect survivor health. A variety of medications are typically used for pain yet are not predicted by patient characteristics or care setting. Palliative care consult service is associated with greater attention to pain and symptoms for hospitalized patients than those who do not receive palliative care. . . . Patients consider unrelieved pain as an important factor eroding dignity at the end of life. Sedation is one therapeutic option when symptom relief is difficult to achieve.
FEN member Craig Phillips has provided a brief essay highlighting his experiences with dying patients gleaned from his volunteer work at a residential hospice. He explains his path to this work in some background information he sent:
Perhaps it was growing up next to and playing in a cemetery that colored my world. But I’ve had a strong lifelong consciousness of mortality. I’m actually quite grateful for that perspective, because it fueled a constant motivation to take actions that would result in my having no deathbed regrets. It’s worked out well.
To that end, three years ago, at 61, I left a well-compensated surprisingly easy job as a corporate VP for a large company. My work had ceased to give pleasure, let alone meaning. I wanted to give back before it was too late.
I chose the path of being an end-of-life doula, sitting with actively dying hospice patients, two to three days per week. The work is profound. It’s an honor to bear witness and perhaps ease another’s suffering. It also intensely reminds me of the tenuousness of life. And that brings mindfulness and gratitude.
Craig’s essay provides a fuller account of some of his experiences:
I am a volunteer “end-of-life doula” for hospice. Multiple times per week I sit with people who are actively dying, in their final hours. My function is to provide comfort, support, and witness when they have no one else. In this work I see more people at the actual moment of death than most doctors, priests, or perhaps even hospice nurses.
The hospice facility where I volunteer is one of the best in the country. Without exception the staff has great compassion and excellent skills. Nurses are artful masters in keeping a patient in the delicate balance of having no pain while being mentally cognizant. Palliative care for pain and for anxiety is nothing less than a miracle of the modern age.
That said, what I’ve learned is that death seldom comes with ease, let alone grace. Even in an ideal situation there is often great suffering for the patient and their loved ones to endure.
Consider that it is probable that our final days will be spent wasting away, not eating or drinking, catheterized, on oxygen yet gasping for breath, while being turned by aids to prevent bed sores, fading in and out of consciousness, in a hospital. That’s if we’re lucky. Or if we are very lucky, the same, but in hospice care. Understand, our bodies and minds can take an agonizingly long time to shut down. We can “last” for weeks in a non-responsive state.
And in my line of work, I see brutal trials. I recall a young woman with a massive tumor growing out of her eye socket. Pain management for her was ineffective….. And I tended to a gentleman with ALS. He was completely “locked-in,” not able to breathe on his own, unable to even move his eyes, yet completely lucid. But few people see these things. We don’t even want to imagine these things. Yet this is likely our fate.
If within my power, this will not be my fate. I hope to die quickly and peacefully by my own hand with those I love present if they wish to be. I’d like a beautiful ending to what’s been a beautiful life. And thus, I support and advocate for our individual right to choose the manner of our departure.
The concluding paragraph Craig sent to me about his background ended with these observations:
My immersive hospice role, while in a top-notch facility, has reinforced one thing: that I do not wish to die as my patients die, and will make my best efforts to avoid it. And thus, I support Final Exit Network, Compassion and Choices, and Death with Dignity.
Almost half of hospice clients are enrolled in Medicare, which pays hospice costs. About 46% of hospice clients are in hospice for 31 or more days. That length of stay makes pain management perhaps the most important aspect of what hospice does. Few people want to be in intractable pain for even one day, but when that pain is beyond control while they are in hospice (or in any other setting, such as a hospital or nursing home), many want to take their lives and deaths into their own hands. Such people believe that a few days or weeks of misery would be purposeless suffering, leading them to find a “good death” in their own way.
I very much agree and am studying this “aspect of life” so to avoid this.
Interesting perspective. Thank you for making it available.
Assuming that a patient no longer wants to live, and has expressed that, pain management should not be an issue.
Since last autumn, I have attended five funeral or memorial services and will attend another next week. None of the deceased died in the manner in which you described. Three died suddenly and at home; two of them had chronic health issues, but were not terminally ill. The other three were long-term care residents. One was found dead during a routine nightly two-hour round bed check. The second returned to the long-term care center after hospitalization for a stroke. He never completely regained the ability to swallow. Hospice was called in. He received IV fluids to prevent dehydration and died naturally, peacefully, and pain-free three days later. The last started refusing food (she had required hand-feeding due to advanced Alzheimer’s for some time). The staff was unable to insert an IV to give her fluids. Per her advanced directive, her husband opted not to have her transported to a hospital. She remained conscious, but medicated and pain-free, until about 36 hours before her death, when she slipped into a coma. At no time was she in pain. In no way do I doubt the author’s experience as a hospice volunteer, but to say that we *all* face torture and suffering near the end of life and must therefore take our lives is patently false and is just unnecessary fearmongering.
Sue, I’m sorry for your losses. Wow, that’s a lot to deal with. It is fortunate that the deaths you describe were peaceful. I didn’t mean to infer *all* deaths were horrible. I have certainly seen some quiet “easy” deaths. I’ve lovingly held hands with people who knew I was there, until they didn’t. It can actually be beautiful and profound. I’m just saying that even in the top shelf-facility where I volunteer, I see what I would call suffering. Sometimes suffering is blatant. Other times it can be a subjective judgement. As example, I sat with a woman recently for hours this week who was taking one breath a second (dying can sometimes be like running a marathon). I never thought she’d be there for my visit 4 days later, but she was (still panting). And I’ve sat with patients experiencing “cheyne stokes” breathing (having pauses of apnea for as long as a minute). This can last for days. Is that suffering? Well, I suppose only the patient would be qualified to say. To me, personally, yes, it is. And I’d be considering my family’s welfare too.
I looked up “fearmonger” and I think you are close to correct in your assessment. I can’t deny being an alarmist. Yet fearmonger infers being a false-alarmist. And that’s where we get subjective again. I wrote this because so very few people see what I see. And because of what I see, it’s my personal fear. My ideal death would be a fully conscious one. Or perhaps one like you describe. The overall point of writing was to advocate for the right for those of us who wish to try to avoid prolonged suffering to have that right to. Thank you for writing. Your comments add balance, and you helped me clarify my intended message.
Peace & Love
Craig