(This column is part of “The Light of Faith and Care at the Sunset of Life,” a series in the Catholic Standard website and newspaper on the Catholic response to end-of-life care.)
A wise man reminds us to “always plan ahead… It wasn’t raining when Noah built the ark.” Richard Cushing’s words are essential in understanding advance care planning. Advance care planning is a way of preserving your decisions about treatments and end-of-life care when you are no longer able to make your decisions known. And while it may not be “raining” at this very moment, each of us knows we must face the reality of our physical decline and eventual death. Advance care planning is a way to start our “ark” and plan ahead. It is also a gift to those who may have to step in to make your decisions known.
Advance care planning can be as simple as having a discussion with your loved ones and your care provider. However, completing an advance directive (appointing a health care agent, a living will) is likely the best way to make sure everyone is informed of your decisions. The advance directive is a way of preserving your decisions regarding end-of-life treatments and care when you can no longer speak for yourself.
This kind of “ark building” and planning ahead nudges us to contemplate what is important to us. It incorporates our personal values, faith, goals of treatments and type of care we want at the end of life. It also nudges us to have difficult conversations with our loved ones. Do they know what is important to you? Do they understand your decisions and your vision of dignity at the end of life? What do you hope for at the end of life? Who will care for you at the end of life? What will that care be like?
Very few people add treatment decisions, quality of life, symptom management and difficult discussions to their “to-do” list. These are hard topics to think about, let alone discuss. Unless you have experienced the loss of a loved one, or work in the world of palliative care or hospice care, it is unlikely you have been challenged to think about these difficult and important questions.
Thinking about and discussing difficult questions during serious illness is exactly the focus of palliative care and hospice care.
Palliative care is patient- and family-centered care focused on caring for the “whole” person during serious illness. Symptom management is focused on both the physical and emotional needs of the person. Palliative care physicians, nurse practitioners, nurses, social workers and chaplains undergo training and certifications in palliative care. The palliative care team can (and should) be introduced into the team of care providers at the start of treatment for serious illness. They work in tandem with ongoing curative treatment.
Most larger hospitals have palliative care consultative services to guide patients and families through difficult treatments, symptom management and treatment decisions. Since most palliative care teams are “consultants” to a patient’s care, the physician or other provider must request that the consult take place. Palliative care may even be available in the community setting through clinics and physician practices. Palliative care is covered by Medicare as a regular physician service. Many private insurances also provide coverage for palliative care and symptom management.
Hospice is a way of providing palliative care focused more intently focused on the end of life. While “end of life” can mean something different to each of us, most hospices use the six-month prognosis as the time to enter into supportive care. Hospice is a holistic team approach with specifically trained physicians, nurses, nurse practitioners, social workers, home health aides, chaplains and volunteers.
The goals of hospice care include serving the dying and their family by preserving the quality of life and the decisions of the patient. This can be achieved by symptom management, addressing the needs of the family, assisting with funeral care options, and attending to the grief of the family after death. Hospice is usually introduced when curative or aggressive medical treatments become excessively burdensome and no longer beneficial to the goal of the treatment. The hospice team can provide care in a private home, a nursing home, assisted living, group home and in some cases an inpatient hospice facility. Some hospitals may even have partnership agreements with local hospices to provide hospice care within the hospital. Hospice at home care is intermittent with nurses and other team members visiting throughout the week with around-the-clock, on-call support.
Medicare beneficiaries enter into hospice care under Medicare Part A. Medicare pays the hospice a daily rate that covers equipment, most medications related to the terminal illness, and visits by the hospice team. Many private insurance companies mirror the Medicare hospice benefit. You have choices to make about the hospice that serves you. Both non-profit and for-profit hospices exist throughout the country. Doing a little research before a crisis can make for informed choices.
After decades as a palliative and hospice care provider, I know the move from curative to supportive care can be filled with moments of anxiety, disbelief, and fear. We avoid the discussions, the planning or “building our ark.” What I know for sure is that avoiding the discussions won’t change the end result. However, being supported by palliative care and hospice can create moments of grace throughout serious illness and the end of life we will all face.
(Anna Moretti currently works as a grief and end-of-life coach. She enjoyed a long career as a palliative care nurse and nurse practitioner with Montgomery Hospice in Rockville, Maryland and earlier served as a nurse with the U.S. Navy at National Naval Medical Center in Bethesda. She currently serves as a community member of the Suburban Hospital Ethics Committee and is a past member of the Maryland Healthcare Ethics Committee Network. She is a member of St. John the Baptist Parish in Silver Spring.)
The Roman Catholic Archdiocese of Washington’s Office of Life Issues is available to host educational events and retreats for end-of-life planning. If your parish is interested in hosting a day of reflection, please contact Kathryn Yanik at yanikk@adw.org.
Related online links:
Health care decision making for Maryland Catholics
https://www.mdcatholic.org/wp-content/uploads/2023/08/mcc-healthcare-guidance.pdf
‘Comfort and Consolation: Care of the Sick and Dying,’ a pastoral letter from Maryland Catholic bishops
https://www.mdcatholic.org/wp-content/uploads/2022/09/comfortconsolation-rev2020.pdf
