A Jolt of Health

Hospice is for anyone, not just presidents

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A few weeks ago, it was ‘front page’ news that former President Jimmy Carter, 98, announced that he wishes to stay at home with his family and the support of hospice. This was his choice to no longer pursue medical interventions or hospitalizations for the ongoing issues that have plagued him in the last months.

Death comes to us all and hospice care is available for everyone. It is available to children, young and middle-aged adults and the elderly. Hospice is one of the most balanced and compassionate services available in our over technical treatment focused healthcare system.

Hospice is a standard benefit of Medicare and most insurance plans.

A most important decision

Hospice eligibility is assured when a physician deems that one’s life prognosis (i.e., life expectancy) is six months or less from any cause.

The point at which a person opts for and is referred to hospice varies. It entails one of life’s most important decisions: when to stop and let go. The process can be painful and complex for the person, their loved ones as well as their physicians. Complicating this is that hospice eligibility rules dictate that the person no longer seeks active treatment of their disease. For example, with cancer, choosing to receive no further chemotherapy, which at the time of considering hospice, is never curative). Rules do not restrict treatments that bring comfort. Medications for heart failure and lung disease, for instance, are continued. Some seek hospice care months before their demise for support through the entire process (the best possible option, in my opinion) and others at the very end (sadly so late).

Having worked the final three years of my career in home health hospice, my colleagues and I wished that physicians referred their patients earlier rather than when death was imminent within days or weeks. Hospice offers immense and invaluable support before the final stage. Team professionals are experts at helping the dying and their loved ones navigate the details and complexity of death. With such support, the dying and their families can find peace and beauty thru this often difficult and sacred life process.

Making decisions about letting go and choosing hospice is best done with the person’s physician(s) who know him/her the best, along with understanding loved ones. A physician must make the hospice referral.

About palliative care

There is now a medical specialty called palliative care that provides care and support to people with terminal illness prior to a decision to seek hospice care. These physicians are adept at having these ‘transition of care’ discussions. There is a wonderful palliative care team of physicians and nurses at Providence St. Peter Hospital.

Stages of terminal illness

Our cultural awareness of the psychology of death and dying came from Elisabeth Kubler Ross, M.D.  in her pivotal book On Death and Dying (1969), which described the stages of facing terminal illness and death. These stages of grief: denial and isolation, anger, bargaining, depression and acceptance are now part of our general cultural awareness. Before this time, it was not uncommon to keep a person’s terminal illness secret from the sick one.

I was five years old when my grandfather was dying of colon cancer. The family made it clear that no one was to let on what was wrong with him; it was a secretive and tense scene in their home until he succumbed.

In 1959, Dame Cecily Saunders, a nurse who became a physician in London, drew up a 10-page proposal for the first hospice, which admitted its first patient in 1967. She introduced the idea of every person’s right to die with dignity, compassion, respect and free of pain. Her concept of ‘total pain’ included physical, emotional, social and spiritual dimensions of distress and pain that led to the truly holistic movement of hospice.

Early hospice services were not at home

That first hospice was one in which the dying came to stay, now called Inpatient Hospice. These facilities exist in most large cities, but not in our small community. In most communities, including ours, the majority of hospice care is provided where people live and is called Home Health Hospice. This is what President Carter opted for. Comprehensive care is provided to people at the end of their lives where they are, in homes of every kind, from shacks to mansions to boats, and at adult family and nursing homes.

The Olympia, Lacey, Tumwater and surrounding counties (Lewis and Mason) are served by four home health hospices. Established vendors here include Providence SoundHomeCare and Hospice, Assured Hospice and Envision Hospice. Bristol Hospice has recently come to Thurston County.

How hospice works

Hospice is mandated to be provided in wrap-around teams. Each person eligible for care is entitled to services from a nurse’s aide, registered nurse (RN), social worker and chaplain who work with a team physician and nurse practitioner (NP). Healthcare coverage by RNs and a physician and/or NP is available 24/7. If pain and suffering is severe and uncontrolled at home (where a large array of treatment options abound – more than you could imagine), one can be admitted and cared for in the hospital. This is typically a last resort solution as most people prefer to remain at home.

In addition, after death, hospice offers bereavement services to families, loved ones and the hospice staff. I have deep gratitude for the bereavement services offered to me and my team’s RN after a most traumatic death of a young woman we cared for.

It was a privilege to work as an equal member of our hospice teams with beautiful, skilled and caring professionals. The aides lovingly bathed our patients in bed or bathtub, the chaplains assisted with the spiritual aspects of facing death for those of every religion or none, social workers assisted in every way imaginable in helping the patients have their needs met on every level. Some of the dying’s life situations are very complicated. The nurses are a special breed with deep compassion, creativity (they have no support ‘out there’ in patients’ homes), dedication and the fortitude to face some of the least pleasant aspects of death every day. The physicians and nurse practitioners rely on the teams’ input to assist in eligibility decisions and, most importantly, in prescribing medication to reduce and hopefully eliminate pain and emotional suffering.

Bringing light to death, The hospice movement has removed the veil of fear surrounding death and is bringing light to this sacred and beautiful phase of life. 

Earlier and broader referrals. Greater understanding of what to expect in the last week of life (particularly understanding the last stage can take 7-10 days) and how to more effectively reduce suffering are at the cutting edge of this compassionate and scientific movement.  

References:

Gone From my Sight: The Dying Experience by Barbara Karnes, R.N. an exquisite metaphorical description of what exactly happens in the last days of life as a person approaches death.

Being Immortal: Medicine and What Matters in the End by Atul Gawande, M.D. is a book for everyone because it is never too early to face and prepare for what to expect towards the end of life, yours and those you love.

Debra L. Glasser, M.D., is a retired internal medicine physician who lives in Olympia. Got a question for her? Write drdebra@theJOLTnews.com

Comments

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  • KatAshe

    March 15, next week will be the one year anniversary of my partner of 29 years, death. On January 22, 2022, Michael was diagnosed with end stage 4 lung and and brain cancer. I had always promised Michael I would never let him die in a hospital. We were fortunate to have a wonderful primary care physician who gave us a full hour after Michael was released from the hospital. By the time we left his office, our physician’s nurse had already completed getting Michael set up with Assured Hospice. Assured Hospice was available to us 24/7. Between or physician and hospice, Michael lived out his last weeks on his own terms, so he was in control of his dying. When the time came, Michael’s death was peaceful and painless.

    Hospice is a blessing that should be taken advantage of for all those who have come to terms with their own mortality.

    Tuesday, March 7, 2023 Report this

  • dlg2022

    Thank you to the first commenter for sharing your personal and beautiful experience with Assured Hospice…you and your stories are how the movement can grow to help more people thru death and dying. - Dr Debra

    Tuesday, March 7, 2023 Report this

  • johnd_nw

    An interesting and well-needed piece.

    Friday, March 10, 2023 Report this