Tag: dying at home

Hospicare 101: It’s All About Living

Posted on by Hospicare

by Jane Baker Segelken, MA, MSW, part of the Social Work team at Hospicare & Palliative Care Services

Many of us are familiar with the statement “hospice isn’t about dying, hospice is about living.” But what does that really mean? When I first became involved with hospice, I quickly realized it’s about quality of life, now and in the future. Hospice is about living the time at the end of our lives with the least amount of pain and discomfort.

For individuals with a terminal illness, hospice — specifically our local Hospicare serving Cortland and Tompkins counties — shifts the emphasis from allowing our medical conditions to dictate how we live to making those decisions on our own and with a team of support. Utilizing a holistic approach that includes the medical director, nurses, aides, social workers, chaplains, and volunteers, Hospicare works to meet the needs of patients and their family and friends.

Correcting Misconceptions

People often may not get the care they need at the end of life because they have a wrong idea about what hospice means. Many of those I knew who became part of the hospice program were slow to get there, in part because they had an impression that didn’t match reality and saw receiving hospice care as giving up. Hospice care is quite the opposite of giving up; it’s all about offering the highest quality of life-giving care as one faces death. Here are some of the facts about hospice care:

  • Your primary care physician and others that offer you care can stay as involved as you want throughout your journey. The staff at Hospicare can serve as principal caregivers or they can support the services you’re receiving elsewhere.
  • Hospice isn’t as expensive as many believe. Rather, many of the costs are covered under Medicare, Medicaid, and most private insurance plans and managed care organizations. No one is ever turned away for inability to pay.
  • You’ll receive hospice services in the setting that is best for you: a private home, hospital, nursing home, or the Hospicare residence on South Hill in the town of Ithaca.
  • There is no limit to how long someone can continue to stay enrolled, although a life expectancy of six months or less is generally required to start hospice services. Although not the norm, there have been cases where someone received hospice services for a year or longer.
  • Family, friends, and caregivers can take advantage of many of the opportunities the Hospicare team provide — hospice services aren’t just for the patient. Friendly volunteers can offer respite to the primary caregivers, and aides can help with errands, cooking, and light housekeeping. Hospicare also provides counseling services, educational programs, and support groups to those who are grieving regardless of whether the deceased received hospice services or not.

When Hospice Might Be The Right Choice

An early referral to hospice — before the situation becomes critical — has so many advantages. The patient and loved ones can take advantage of the many services available including the company of trained volunteers who will do friendly visiting, play music, share hobbies, and offer respite to the caregivers. Signing on early also means that the patient can receive specialized nursing care and medications, medical equipment, and supplies sooner than they might have otherwise. Individuals can self-refer to Hospicare when they’re ready. Anyone can contact Hospicare to begin the referral process; it does not have to begin with a physician.

It’s also important to know that if you change your mind and decide that hospice isn’t the right approach for you at the moment or that you’d like to pursue treatment aimed at curing your disease, you can sign off hospice services. If at a later date you change your mind again, a simple phone call can restart the referral process.

Hospice is About Living

Choosing hospice is a shift from disease maintenance and fighting a health condition to focusing on quality of life. It’s not allowing a medical condition to dictate life choices, but instead putting those choices in your hands. Most of all, choosing hospice means that individuals can live their full rich life until the end — and that they don’t have to die alone, afraid, or in pain.

Choosing hospice is not a death sentence. It is life affirming.

To learn more, call the Hospicare admissions staff at 607-272-0212.

Visit our events page to sign up for this July 19th Hospicare 101 event at Longview and see more upcoming events on this topic and more.

Most of Us Want to Die at Home

Posted on by Hospicare

by Dr. Pat Hayes

Home is where my heart is. When I’m home, I’m comfortable. I get satisfaction out of sitting in my favorite chair, looking out the window at my backyard, even eating off the plates my wife picked out. I imagine if I were dealing with a terminal illness, little things like that would matter even more. Recent polls show that approximately 80 percent of Americans want to die at home, and I imagine their reasons are similar to mine.

But the statistics show that most Americans don’t actually die at home. In fact, only 20 percent have the privilege of taking their last breath in the comfort and familiarity of their home. There’s a big difference between what we want and what actually happens.

As a doctor, I saw patients and families wrestle with this dilemma. Often the patient ended up in the hospital, sometimes multiple times in the course of the illness, and the family and medical staff did all they could to keep the patient alive even past the point where curative treatments were an option. That frequently meant longer hospital stays and more extreme measures that made it difficult or impossible for the patient to return to their own home.

It doesn’t have to be this way. If you want to die at home, begin telling your loved ones about this desire as early as possible—even before you have a life-threatening medical condition. The more you talk about your wishes, the more your loved ones will understand the importance you place on it. And there’s something else you can do—something that can have the greatest influence on whether you die at home or not. If you or your loved one should have a life-threatening illness, consider calling in hospice as soon as you are able. (Remember, Medicare and most insurance policies will pay for hospice once a physician has determined the patient has six months or less to live.) In Tompkins and Cortland Counties that means calling Hospicare.

Like all hospices, Hospicare uses a team approach. Along with a doctor whose specialty is end-of-life care, they provide specially trained nurses, home health aides, spiritual care experts, bereavement counselors and other healthcare experts. All of these highly trained professionals are focused on keeping the patient comfortable and helping their family members cope with this highly stressful situation. They not only know how to care for people in their own homes, they are dedicated to helping patients die there if that’s what the patient wants.

They are also experts at pain and symptom control. I’ve seen patients’ comfort improve considerably once they’re receiving hospice services. I’ve also seen their family members breathe sighs of relief as hospice team members ease the burden of care. Looking back on my patients who died at home, I can’t remember any situation where that decision turned out to be the wrong one.

Hospicare has a motto I always find uplifting: “It’s about how you live.” Dying at home surrounded by the people and things we love is one way to celebrate life all the way until the very end.

Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the February 4, 2017, issue of the Cortland Standard.