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Multiply Smallnesses - American Agriculture from Consumption to an Ecology of Hope - The InnerView with Gary Holthaus Interview by Peter Moore
Physicians’ Perspective: Understanding Hospice by Dr. Rick Bayer, MD
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Life Advice from Catherine Ingram
Understanding Hospice by Dr. Rick Bayer
Gallup polls show 90% of Americans wish to die at home surrounded by loved ones rather than die in a hospital. When we contemplate long-term incurable illness and modern medicine, we naturally fear pain, isolation, loss of dignity; or becoming a physical, emotional, or financial burden on loved ones. During my practice, I routinely educated patients that the default setting of medical care is always to prolong the quantity of life – even if it hurts, makes you sick, or carries risk.
Why do patients fear dying in pain? The American War on Drugs has put a chill on pain management for so long that many doctors lack the skill to treat pain. Others refuse to recommend opioids or cannabis to treat pain because they fear losing their medical license. Untreated pain is so common that the Oregon legislature passed a law requiring doctors to receive education in pain management before Jan. 2, 2009.
The Drug Enforcement Administration (DEA) frightens even board-certified pain specialists. Some cancer specialists discharge patients if they no longer wish aggressive surgery, radiation, or chemotherapy. When patients return to their primary doctor, they often find the doctor lacks pain management skills or is too frightened to prescribe. [All of which invites our response to sweep away the current state of things, but that is a subject that is more about politics than pain management.]
Hospice care is a medical service choice when life-limiting illnesses no longer respond to curative treatments. It in not an end to treatment—it is a shift to intensive treatment of the symptoms of disease. Although pain management is a primary goal of the hospice team, hospice also provides extensive counseling, social services, and even physical and occupational therapy to make living more enjoyable.
Hospice honors the principle of medical ethics called patient self-determination. This means a patient, after proper consultation, makes his or her personal treatment choices. In other words, patients should be able to choose aggressive treatment or no treatment, or anything in between, without fear of medical abandonment. Many patients with chronic illnesses eventually tire of recurrent surgery, chemotherapy, and hospitalizations. They seek better quality of life even if it means less quantity of life. They can even consider using Oregon’s Death with Dignity Act while receiving hospice care.
A team of healthcare professionals provides hospice. Nurses, social workers, counselors, and a physician medical director meet regularly to discuss treatment. A hospice nurse provides direct care so patients may not actually see a physician. However, hospice nurses routinely contact patients’ regular attending physicians.
Medicare, Oregon Health Plan (Medicaid), the Veterans Administration, and most private insurers cover payment for hospice. Hospice care is provided in the home, foster home, assisted living or other long-term care facility.
When hospice became a Medicare benefit, patients had to be terminal or within 6 months of dying to enroll. Eligibility is more flexible now. Medicare publishes guidelines for various illnesses including Alzheimer’s, lung disease, heart disease, and general disability. Hospice is available as long as patients meet guidelines even if care extends beyond 6 months. If the terminal illness does not run a typical course, no one is penalized. Patients can leave hospice and return as necessary.
The Oregon Hospice Association is a charitable, public benefit, not-for-profit membership organization that promotes access to high quality hospice and palliative care for all Oregonians; advocates for the need of those facing life-threatening illnesses; conducts research about end-of-life choices; and provides professional education and public information about hospice and palliative care. The website www.oregonhospice.org has downloads including advance directives. They sell an excellent handbook Hospice Care: A Physician’s Guide edited by Ann Jackson, RN of Oregon Hospice Association. This book is a guide for everyone and includes Medicare eligibility guidelines.
How can Americans become more aware of hospice? Dr. Gail Gazelle writes in The New England Journal of Medicine that physician attitude is key. Some physicians regard patient death as professional failure. Some view hospice as reserved for imminently dying patients rather than any facing advanced incurable disease. In addition, there are physicians who fail to disclose end-of-life care choices because of religion. These viewpoints deprive patients of hospice services. Physicians should respect patient choices while patients should receive full disclosure and have easy access to second opinions.
I recommend that patients learn about hospice rather than depend on doctors. During each visit, the ethical doctor provides a safe nonjudgmental atmosphere for patients to discuss end-of-life care including advance directives, second opinions, shifting treatment goals, and hospice. Since there are religious physicians and religious health care systems that employ doctors, it is important to ask doctors about conflicts surrounding employment, religion, and end-of-life care.
In Oregon, the politics of end-of-life care educates us. Oregonians are more likely to die at home with hospice compared to other states whose citizens are more likely to die in a hospital without hospice. Hospice was innovative in the 20th century. In the technology-intensive 21st century, perhaps hospice has become even more necessary.
Richard “Rick” Bayer, MD, FACP is board-certified in internal medicine, a Fellow in the American College of Physicians (FACP), practiced, and lives in Oregon. He is a member of Physicians for a National Health Program www.pnhp.org