In 2014, the Institute of Medicine published a report entitled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.
It’s a long report, but if you plan to grow old in this country or have a close friend or relative who is already elderly, it’s probably worthwhile to read this document.
The Institute of Medicine is an independent, non-profit organization that is not associated with the government and provides unbiased and authoritative advice to decision makers and the public. In producing this report, they met with experts in the field and also collected testimony from the public.
The Institute’s findings were far from flattering; for such a wealthy nation we could do a lot better in how we care for our citizens approaching the end of life. Here is a quote from the report’s description: “For patients and their loved ones, no care decisions are more profound than those made near the end of life.
Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families.”
The report also emphasizes how:
- The number of older Americans who are frail and are having increasing physical or cognitive deficits and/or chronic illnesses is growing rapidly and how our current system is not yet equipped to deal with these challenges.
- Too often communication between patients, families, and clinicians is weak.
- Patients often don’t die in the manner they prefer.
- There are too few palliative care specialists and lack of adequate financial and organizational support for the needs of ailing and dying patients.
- In spite of the fact that we all share in common the reality that each of is going to die someday, it remains hard for us to have direct and honest conversations about end-of-of life issues.
And among the moving quotes from public testimony to the committee was this one that brings to mind so many patients, “As my 88-year-old father-in-law was in decline with eight different chronic conditions, he had more specialists then we could keep track of, and nobody was steering the ship. Most of all, his pain was poorly managed, but finding an outpatient palliative care physician wasn’t possible, even in a city like Los Angeles. He resisted hospice mainly because he thought that meant he was giving up, so he continued to suffer and experience recurring runs to the emergency room. When he finally agreed to home hospice, his care and condition improved dramatically, and during the final month he lived under hospice he was comfortable, he had heartfelt conversations with all 11 of his children, and he died in peace and dignity in his home. It was a good death, but the period of serious, progressive illness before hospice was a nightmare, because hospice type care is kept out of reach until the last moment of life.”
So, it is hopeless? The report makes recommendations to improve this type of care and there is nothing that is terribly difficult or outlandishly expensive. In fact, the real irony is that providing genuine patient/family centered care at end-of-life will probably save money. The only thing we lack as a country is the commitment and determination to make this better. Healthcare providers, patients, families, and health policy makers need to work together.
In our community, we already have an incredibly strong foundation for end-of-life care, and Halifax Health has played a leadership role in building this foundation. The system’s hospice organization has been serving the area for over 35 years. Halifax Health – Hospice typically cares for over 600 patients on any one day, mostly in their place of residence. Halifax Health – Hospice now has four free-standing Care Centers, and it’s palliative care consultation service has been providing patient/family centered care to hospitalized patients with advanced illness for over four years and sees almost 100 new patients per month. Our organization’s mission has included offering end-of-life education to healthcare providers in all disciplines, and at this time we have 10 physicians with specialty board certification in palliative medicine as well as specialty trained nurses, social workers, nursing assistants, and chaplains. We were pioneers in developing the role of the hospice/palliative nurse practitioner and now have six who offer outstanding clinical expertise, compassion, and communication skills throughout our community.
The road ahead is challenging if we want to truly improve end-of-life care in this country and address the concerns so apparent in the Institute of Medicine report. In our community, we have a head start. We have systems, organizations, and well-trained people in place to take the next steps.
I am looking forward to the months ahead as we strive to: move palliative care out into the community; get more of us comfortable with having the important conversations about end-of-life goals/wishes; increase completion rates of Advance Directives; develop partnerships with facilities/services/ organizations/providers serving the elderly to better coordinate care and reduce unnecessary transitions; and continue to educate specialists in this field.