By Johanna Turner
Each year, about a million families facing life-threatening illness struggle to make the critical decisions that affect the quantity and quality of life: What’s the best treatment for me? Where do I find it? What is too much or too little? How do I keep myself and my family whole – physically, emotionally, spiritually?
Many Americans find the answers through hospice care and palliative care, two terms that have redefined choices for a generation of critically ill individuals and their loved ones. Before the American hospice movement began to bloom in the late 1970s, patients and families were usually told what was best for them to do and they did it; there was no other choice. They accepted that the only place to be very sick was a hospital, the only people wise enough to make decisions and provide care were doctors and nurses, and that pain and isolation were often an expected part of the journey.
Hospice changed all that. The wise people who pioneered a healthcare revolution taught us that each unique human being can instead shape his or her final months according to personal wishes, goals and beliefs. This part of life called dying can be rich and comfortable when loved ones are helped to participate in making decisions and giving care. State-of-the-art medicine can be more than just curative treatment; its focus can also be on alleviating pain and other troubling symptoms. What makes hospice a reality is a team of profoundly skilled and committed clinicians with a vision of great, rewarding end-of-life care.
Since its introduction in 1974, hospice care has been embraced by millions of families coping with terminal illness and by insurers who recognize that hospice is cost-effective. The Medicare Hospice Benefit – the best deal in Medicare – covers virtually all expenses. Most private insurance plans and managed care organizations also offer some type of hospice coverage, usually when physicians certify a six-months-or-less life expectancy.
Over the years, many people have discovered that the hospice experience is exactly what they need in the last stage of life. Could this model be expanded to serve others? The same principles that improve end-of-life care could also make a difference earlier in the disease process, before the determination of life expectancy can be made. Even as active treatment continues, needs for symptom management, family support, and education must be met.
In response to these needs, hospital-based palliative care programs emerged in the early 1990s. Palliation is relieving or alleviating symptoms without affecting the disease process, and while there have been elements of palliative care in most good treatment plans, today’s well-defined programs are new to our healthcare system. No longer just an abstract concept, palliative care is now a carefully structured system for healthcare delivery.
The goal of modern palliative care, for persons at any stage of a serious illness, is to achieve the best quality of life for patients and their families, consistent with their values. This care, which may be given even while curative treatment is underway, includes expert symptom management, support for caregivers, and access to therapies that can improve comfort and peace of mind.
A good palliative care program coordinates patient care across multiple locations and providers. Since critically ill people often have a primary physician, at least one specialist, home care personnel and perhaps other therapists, they may, within a short period of time, be at home, the physician’s office, a hospital, a nursing home, an ICU and a rehabilitation facility. It is no surprise that family caregivers often become overwhelmed and feel alone in trying to hold it all together. Palliative care programs work to ensure continuity consistent with patient and family goals. Although Medicare or insurance plans may cover some individual palliative care services, to date there is no specific, broad coverage like the Medicare Hospice Benefit for palliative care programs.
The impact of hospice and palliative care is shaping the career field for physicians, nurses and other healthcare professionals. Highly qualified registered nurses can become Certified Hospice and Palliative Care Nurses, and the American Board of Medical Specialties is preparing to offer physician certification in hospice and palliative medicine as a subspecialty. Healthcare consumers will soon be able to look for certifications as signs of clinical excellence in this unique field.
So what’s the difference? When do we choose palliative care, or when do we choose hospice care? Indeed, palliative and hospice care programs share the same goals and values: physical, emotional and spiritual comfort; choices based on individual needs; respect and care for both patient and family; information to make the right decisions; continuity of care. Upon a diagnosis of a persistent, debilitating and life-limiting illness, we can ask to include palliative care in the treatment plan at any time. Early introduction to palliative care will help clarify goals and ensure that they will be followed, no matter who is providing the care and where it is delivered. In the later stages of the illness, patient and caregiver needs will increase. The time for hospice is now, taking advantage of Medicare and insurance coverage for a concentrated level of experienced, compassionate care.
When treatment-for-cure no longer offers hope for a good life and death is expected, hospice professionals provide palliative care… and more. They are the specialists in end-of-life care, uniquely able to help patients and families maximize living even as they grieve the coming loss, ensure freedom from pain while preserving awareness and a sense of control, and recognize gifts and blessings even as the final days approach. Hospice enables families to say confidently, “We couldn’t have hoped for more.”