AN ESTIMATED FIFTY-THREE MILLION AMERICANS, one out of every five people over the age of eighteen, are now providing care or assistance to a friend or family member, the majority without pay.1
As our population continues to age and require more care, the physical, mental, and emotional burden on caregivers continues to escalate. The collective toll in regard to well-being, loss of work, financial stress, etc., is significant, and deserves attention.
The Centers for Disease Control and Prevention (CDC) are calling our national caregiving situation a “public health crisis.” In the coming years, as the wave of aging Baby Boomers crests, a Silver Tsunami will raise this astounding number even higher. Yet amidst the gathering storm are rays of hope. A partial remedy lies at the heart of Palliative Care.
A palliative approach offers the best chance of maintaining the highest possible quality of life for the longest possible time for those living with advanced serious illness.
—Institute of Medicine, Dying in America
The term, “palliative care,” was coined in the late 1970s by Dr. Balfour Mount, a surgical oncologist. His intent was to distinguish this emerging medical specialty from hospice care, from which it evolved. His motivation was to find a way to blend ongoing medical treatment with the holistic benefits of the emerging hospice model, which recognizes and strives to ease the emotional and spiritual distress that often accompanies advanced illness.
Next year Hospice will mark its fiftieth anniversary in the United States. Most baby boomers (seventy million strong) are generally familiar with Hospice, and millions have a personal connection through the death of a loved one. Compared to Hospice, the field of Palliative Care (PC) is lesser known, leaving many uncertain how to even pronounce it.
Lesser known still, is the intricate relationship between Palliative Care and Hospice. To this day, and to its detriment, Palliative Care is often confused with Hospice. Let me attempt to clear that up.
Quality of Life is the Focus
Palliative Care is a medical specialty for people facing serious and chronic illness. The PC team focuses on symptom relief – of body, mind, and spirit – no matter the diagnosis, to improve quality of life for both patient and family. Palliative Care does not focus on death or time limits. In essence, it provides relief without having to give up.
It can be provided along with curative treatment and is focused on clarifying and preserving what the patient holds most dear. Throughout one’s illness the PC team wants to know: “What’s important to you now?” The team’s guiding light: to listen, to learn, and to respond accordingly.
The team usually includes a physician, nurse, social worker, chaplain, and other specialists who work together to provide an extra layer of support. All are specially trained to deal with issues that arise during serious illness. The team strives to understand and support the patient’s goals and preferences beyond medical procedures.
A Palliative Care consult is appropriate at any time in the course of serious illness and can be requested by the patient’s attending physician or by the patient themselves.
Eventually, at a self-determined crossroad, a patient may develop the resolve to say to their physician: “No, thank you. I don’t want further aggressive treatment. Please just keep me as comfortable as possible.” This is when the hospice team is asked to participate. Hospice Care is simply Palliative Care when a cure is no longer possible or being sought.
Moving The Conversation Upstream
I’m an outspoken advocate for initiating Palliative Care (PC) conversations earlier in the course of serious illness. As discussed in my last post, serious illness conversations (SIC) are a cornerstone of PC, and can empower patients and their surrogates to reflect on and maintain a say over their treatment plan.
These conversations are important and pivotal, and can shape the closing years, months, and weeks of life. The Palliative Care clinician asks leading questions that allow the patient and surrogate(s) to participate in defining a care plan that attempts to balance life-prolonging treatment (chemotherapy, radiation, late-stage hospitalization, ICU admission, late-stage surgery, and MRIs) with non-medical psychosocial, spiritual, and caregiver support.
All Caregivers Can Learn Basic Palliative Care Principles
The PC model is our healthcare system’s moral compass and North Star. ALL patients with chronic and advanced illness could benefit from learning about Palliative Care and its holistic support. That said, there are barely enough trained Palliative specialists to meet the current demand. While medical schools ramp up to meet the growing need, all caregivers are encouraged to learn and share these basic Palliative Care principles:
- Being present, and offering one’s full, undivided attention.
- Being generous with one’s time.
- Listening more than talking, with empathy and compassion.
- Learning about the person and what matters to them.
- How does your loved one define “quality of life?”
- Helping the person document their healthcare wishes, if they so choose, through an advance directive.
- Asking if they’d like to talk with a Palliative Care specialist.
Caregivers are the Medical Team’s Eyes and Ears
Remember the importance of simply keeping our loved one company. Our mere presence can be a healing comfort. Be aware and on the lookout for notable changes. Sharing our observations and insights can be very helpful to the medical team.
Physically, is our loved one’s pain being well managed? Are they relatively comfortable? How’s their appetite? Are they safe? Mentally, is our family member still well oriented? Are they engaged? Bored? Or confused? Emotionally, is our loved one calm? Anxious? Bereft? Hopeful? Lonely? Afraid? Or angry? Spiritually, what seems to give their life meaning? Do they feel loved? Are they at Peace? Do they feel forsaken? Abandoned? Or grateful?
The Bottom Line: An Essential Need for Self-Care
Whether you’re a an informal, part time caregiver, or a full time, paid professional, this can be demanding work. The need for caregiver support and education is ongoing. There are some helpful online resources available which I’ll list at the bottom.
Please remember to include yourself in the circle of care. Ask yourself what’s required to make caregiving sustainable. Rest and recovery are essential. Also, talking with other caregivers is a helpful coping strategy. Even when things go as well as possible, caregiving is still a demanding labor of love.
A Simple Call to Action
By acting on what we learn as caregivers and talking with the people who matter to us, we can have a decisive say in our end-of-life care… Simply by having The Conversation… ‘No forms, or documentation are required… ‘Just a non-threatening, tentative plan, shared with the people who care about us, all subject to change as need be in real time… It’s a Conversation just waiting to be started.
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.
Next Post: ‘Still Deciding : )
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Until next time, ‘Safe Journeys,
Online Resources for Caregivers:
- Caregiver Action Network: www.caregiveraction.org
- AARP: https://www.aarp.org/caregiving/
- A Place for Mom: www.aplaceformom.com
- 2020 AARP Study: https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf