Addressing end-of-life issues in Sisters Country

We'd all like to think we're going to live forever, but the truth is, 100 percent of us are going to die. Whether from old age or disease, most of us would prefer to die while doing something we love to do or at home in our own bed in our sleep. The reality is that 70 percent of us die in hospitals, nursing homes or long-term care facilities.

Jennifer Blechman, MD, of Partners In Care - Hospice, Home Health & Palliative Care, provided some key statistics to The Nugget:

Over 90 percent of people think it is important to talk about their end-of-life wishes with loved ones, but fewer than 30 percent do; 82 percent think it is important to put their wishes in writing, but only 23 percent have done so. People say they don't want to burden their families with tough decisions, but rarely do they convey their specific wishes to family members.

It's difficult to keep up with all the changes in the healthcare system until we suddenly run up against them and don't know where to turn. Partners in Care Bend and Hospice of Redmond are good resources for caregivers and seniors for explanations of all the changes, and to meet your immediate needs.

Palliative care is now being offered to patients after discharge from a hospital, which cuts down on hospital stays and provides follow-up through recovery. A team of palliative doctors, nurses, social workers, physical therapists and dieticians work with the patient to cut through the paperwork and find appropriate after-care services. If a patient needs to go back into the hospital or onto dialysis, it is a more seamless process, which allows families time with their loved one instead of filling out more forms.

When is the right time during the course of an illness or advancing age to talk about hospice? Actually ... long before it's needed. Over dinner tonight, start having "the conversation" with your family (there will be many more) about your values, your thoughts about end-of-life, who you want to speak for you if you are unable to, how you would hope to die. Your end-of-life decisions are about what you want. This treatment, but not that one ... but only for so long. Do everything. Do not resuscitate.

Families, who haven't had The Conversation and filled out an advance healthcare directive, and are forced to make life or death decisions, are often traumatized for years. Did we do the right thing? Is this what she wanted? Family arguments often break out over futile medical procedures and keeping someone alive or letting them go peacefully.

"Hospice" is a frightening word to even consider, much less say out loud. It's like saying you're giving up hope. But hope is not a plan, and too many people wait too long to even ask for the information. Many doctors wait too long to bring up the hospice option because they don't want their patients to think they've given up on them. Ironically, people often live longer than expected on hospice once relieved of the stress of more invasive procedures.

May Fan, M.D. of Bend Memorial Clinic Sisters told The Nugget, "I think that the primary reason providers are hesitant to bring up the option of hospice is that it is difficult to tell when a patient has a life expectancy of six months or less. Many patients have a clinical course that fluctuates or levels off for long periods of time, and it only becomes clear at the very end. Also patients may not accept a doctor's recommendations for palliative or hospice care because they do not want to 'give up.'"

Lori Weber, transition coordinator with Partners in Care Bend, holds monthly educational programs and offers guest lectures about advance care planning, falls and fall prevention, home healthcare and hospice, and Medicare benefits. She says, "hospice isn't about giving up, it's about living your last days as comfortably as possible and being able to spend quality time with your family."

How does a family caregiver know when to bring hospice up to the doctor? "When the patient is eating half as much as they used to, is losing weight, having multiple infections and is unable to get over them, is having increased falls. Anything that changes and doesn't go away," Weber says. "It may not be time to sign up, but you'll have the information if you need it."

Surgeon Atul Gawande, author of "Being Mortal: Medicine and What Matters in the End" lost his (doctor) father recently and found his experience with hospice changed the way he thought about end-of-life.

Dr. Gawande learned that people have more meaningful priorities than just living longer, and the most reliable way to learn what they are, he says, is to "Ask them. But we don't."

"It turns out," he says, "what people need most is help talking to their families."

Dr. Blechman notes, "There are many tools available to help with these discussions. One is called 'The Conversation Project,' which is a campaign in collaboration with the Institute for Healthcare Improvement, and aims to be sure people's wishes regarding end-of-life care are expressed and followed. Their website, http://www.theconversationproject.org, contains a starter kit to help you organize your thoughts, and guides you on ways to have the discussion with those close to you."