The word hospice originated from the Latin hospitium, which means “to host or offer a place of shelter.” In 2009, an estimated 1.56 million patients, more than 40 percent of deaths, received hospice services in the United States. But many others who might have benefited from hospice care did not seek services, perhaps due to misconceptions, fears and the lack of information of patients, caregivers and even physicians.
“Hospice is a collection of services that are designed to support the patient and family through the course of a serious or terminal illness,” said Donald Schumacher, Psy.D, president and CEO of the National Hospice and Palliative Care Organization (NHPCO). The aim of hospice is to provide physical and emotional care and comfort in the months, weeks and days before death.
It’s often hard for patients and their loved ones to acknowledge that the time to consider hospice care has come. People come to that realization differently and there are some that might never seem to face that the end of life is near. But through the ups and downs of emotions and physical status, hospice team members Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
The recent Washington Post article entitled, “Who decides when medicine prolongs dying, not living?” perfectly captures my earlier blog on why we’re afraid of death. An excerpt from the Post piece:
[There's a] huge gap between Americans’ wishes about end-of-life care, as expressed in numerous public opinion polls, and what actually happens in too many instances–futile, expensive, often painful procedures performed on people too sick to leave the hospital alive–much less survive with a decent quality of life. Ninety percent of Americans say they want to die at home but only 20 percent do so. Half of Americans die in hospitals and another 25 percent in nursing homes, after a long period of suffering from chronic, incurable conditions that finally become untreatable. An astonishing one out of five die in intensive care units, often unconscious, isolated from loved ones and hooked up to machines that do nothing but prolong an inevitable death.
This happens partly because of the natural human tendency to procrastinate about addressing painful subjects with relatives and partly because doctors are often too pressed for time–and too uncomfortable with death and dying themselves–to respond when patients do bring up such issues. Just try to get a straight answer out of an oncologist, as an 89-year-old friend of mine did when her doctor advised another course of chemotherapy even though her cancer had metastasized to her brain. “Doctor,” she asked, “what chance is there that I’ll have a few months more of life that I can enjoy with my family?” He replied, “We can’t know these things.” She replied, “No, but we can use our common sense,” and declined further treatment. She died a month later in hospice, surrounded by her children, grandchildren and great-grandchildren. What if she hadn’t been clear-minded enough to to speak for herself? What if her children, out of love, guilt or a combination of the two, had subjected her to treatment that she wouldn’t have wanted? That is what advance medical directives are intended to prevent. Read more »
*This blog post was originally published at A Medical Writer's Musings on Medicine, Health Care, and the Writing Life*
This is a guest post by Dr. Barbara Okun and Dr. Joseph Nowinski.
End-Of-Life Planning Makes It Easier To Say Goodbye
Saying goodbye as the end of life approaches can be difficult, even for those with a gift for words. In a moving account in a recent issue of The New Yorker, writer Joyce Carol Oates describes the last week of her 49-year marriage, as her husband was dying from complications of pneumonia. Like A Year of Magical Thinking, Joan Didion’s poignant memoir of her husband’s sudden death and its aftermath, Oates’ essay highlights the need for each of us to think about death and dying — and discuss them with loved ones — long before they become a likelihood.
In our work with individuals and families facing death, we have seen too many people miss the opportunity to say goodbye because they avoid what feels like a scary or taboo topic: What do I want to happen when I die? Beginning this discussion early, preferably while you are in good health, can help pave the way for a “good death.” In our new book, Saying Goodbye: How Families Can Find Renewal Through Loss, we offer a guide to help individuals facing a terminal illness and their families navigate the realities of death and dying. Planning ahead is essential. Here are some suggestions for doing that:
Choose your team. Identify support people and specialists (legal, medical, financial, religious) you can count on to advocate for you and help you make decisions. Designate these people to act for you by signing advance medical directives. Read more »
*This blog post was originally published at Harvard Health Blog*