My previous post – on the importance of conversations about what quality of life means to us – was published on April 1. I promised you that this was the first of a two-part series.
Well, we are now in September – four months later! In these intervening months I’ve experienced a wonderful – and occasionally challenging – transition. In June, after a year of downsizing, I moved from my home of 30 years on Mercer Island, Washington, to new beginnings in a small and cozy cottage in Seattle, near the University of Washington. I sold my house. I’ve since worked at “up-sizing” my new digs with carefully chosen furniture and furnishings. I am settling in and getting acquainted with my new neighbors, and neighborhood. In short, my house and environs are gradually becoming what I now call “home”.
With that, it’s time to delve into an area of significant meaning to me, and which I want to share with you: The gift and blessing of palliative and hospice care, as one transitions from treatment interventions associated with chronic or terminal illnesses, to embracing the end of life journey.
The medical profession is quite understandably focused on healing, often in the context of perpetuating the ongoing search for one more treatment option. After all, when we are ill and go to the doctor, we want to know that our physician “has our back”, can diagnose what’s wrong, and prescribe the appropriate treatment that will allow us to be on our way pain and sickness free.
When a loved one has a terminal illness, however, a point is often reached where treatment that is focused on cure, bumps up against the often painful and debilitating side effects associated with prescribed medical interventions. When this stage is reached, the “do no harm/healing” approach may have the impact of missing an amazing opportunity to attend to the “whole person”, emotionally, psychologically and spiritually, as the loved one reaches the end of their life journey.
At the time my wife Nancy was in the later stages of her dementia, I had heard of palliative care but had no real understanding of what it entailed. I thought palliative care simply meant deciding when to engage hospice. That decision, to be candid, is irrevocably linked to when an individual is qualified for Medicare hospice benefits. Hospice care – where the focus is on interventions designed to maintain comfort, not cure – can be implemented if a hospice doctor and an individual’s regular doctor, if they have one, certify that an individual is terminally ill with a life expectancy of 6 months or less (this time window can be recertified by a hospice doctor). Further, and most importantly, when hospice is being considered, the individual needs to also accept palliative care – for comfort – instead of for treatment of the underlying illness. In short, hospice treats the person, not the disease.
The National Hospice and Palliative Care Organization provides this definition of palliative care: “Palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, access to information and choice.”
It is very important to understand, however, that palliative care – which consists of a comprehensive team of care professionals – can in fact be engaged as soon as an individual is diagnosed with either a life threatening, or serious, illness. This is regardless of the trajectory of the illness and the patient’s time-line towards the 6-month hospice care window, when Medicare benefits kick in. Palliative care is, thus, an amazing and embracing holistic care umbrella, extending protectively over the entire family, and providing a wonderful array of supportive services.
EvergreenHealth, which provided Nancy hospice care, describes their hospice team as consisting of a hospice medical director, nurses, social workers, pharmacists, CNA’s, hospice and palliative care volunteers, spiritual care, and bereavement services. Palliative services, as an entity, can thus be seen as a “comfort care container”, providing support for both the patient and the family along many fronts.
“Palliative Care providers spend time with patients and families clarifying care goals, and work to ensure that the medical care provided throughout each patient’s course of illness is aligned with these goals.” (Evergreen Health. (2016). Palliative Care Consultation. Retrieved from https://www.evergreenhealth.com/palliative).
So what does this mean in the context of when it is best to engage palliative care services?
As a professional mediator I have witnessed the power and grace of dialogue, when individuals in conflict and pain are free to share their needs and interests, fears and anxieties, and be truly heard in a safe and confidential environment. This can be a dynamic and transformative process.
Family members and patients facing serious illnesses or end of life matters need to be empowered and emboldened to speak to their anxieties and fears. There is intrinsic value in the family and patient being able to “speak their truth”, and to be able to authentically engage with each other and have the opportunity for true, holistic healing to occur.
One way for this to happen is, literally, to “give permission” to families and patients to reflect on what quality of life truly means for them, and then to engage palliative care services as early in the diagnostic process as is desired and reasonable. They should know that doing so could be experienced as a natural transition, an opportunity for a real and authentic closure during this stage of their life. Looking through a holistic lens, palliative care can thus naturally segue into hospice care at an appropriate point in time along the end-of-life journey.
There are wonderful and informative resources available to you as you face into the real life challenges and experiences associated with a serious or terminal illness. Here are a few to consider:
Trudy James is an accredited interfaith chaplain who has done extensive hospice work, and has focused on end of life preparation and planning. She created a series of community-based, 4-part end-of-life planning sessions called “A Gift for Yourself and Your Loved Ones”. I have attended this workshop series and found it very enlightening and informative.
In response to myths and fears around dying, Trudy created a moving and revealing 30 minute film, “Speaking of Dying”. This film portrays, with sensitivity, grace and care, how several families and individuals authentically faced into their own end of life situations and circumstances.
Another amazing and truly comprehensive resource for those in the Washington State area, is “End of Life Washington” (formerly Compassion and Choices of Washington). This non-profit organization provides advocacy, resources, and support to people facing terminal illness, and their loved ones. It is invaluable in my estimation!
A fitting closure to this two-part series on quality of life and the end-of-life journey, is to share a few choice thoughts and reflections from the preface of a truly wonderful book – and resource – by Megan Carnarius, RN, NHA, LMT, entitled: “A Deeper Perspective of Alzheimer’s and Other Dementias: Practical Tools With Spiritual Insights”:
“My wish for those who care for those of us going through the difficult dementia journey is that we strive, through the tumultuous waves, to remain awake and open to the blessings of that journey . . .
My wish for those brave individuals living with memory loss illnesses is that they be supported and allowed to live their experience fully in their own unique way, to recapitulate, to express, to love and be loved, and to be sheltered from harm . . .
My last hope is that in the final stages, when ready, the individual can let go and be allowed to let go, when they know it’s time.”