Hospicare 101: It’s All About Living

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.

Myths and Truths about Pain and Pain Medicine

by Eric Lessinger, MD

As Medical Director of Hospicare & Palliative Care Services, I spent a considerable amount of time addressing issues related to pain and its treatment. Some people have deeply-held beliefs about pain medication which have little or no basis in reality, but which interfere with their willingness to take the drugs that will provide needed relief.

Myth: One person can judge another person’s pain by observation.

Truth: What people say about their pain is the best way to know how much and what kind of pain they have. Some people with severe acute pain and many people with chronic (constant) pain may not show any signs of pain.

Myth: The use of strong medications for pain can lead to addiction.

Truth: Addiction begins as a psychological phenomenon. It is extremely rare for a person to become addicted to narcotics if the medication is being used to treat pain, and the person was not addicted before.

Myth: People taking narcotic medications can’t function well.

Truth: Moderate to severe pain itself often interferes with psychological and physical function. People getting adequate relief of pain through use of narcotic medication commonly think more clearly and function better physically than they did before taking the medication. Side effects of narcotics commonly do include sedation, nausea, and constipation. However, with chronic use, sedation and nausea almost always resolve, leaving only constipation as a side effect which does require ongoing treatment.

Myth: People taking narcotics become dependent and can never stop.

Truth: If the source of the pain is eliminated, a person can safely taper off. On the other hand, with chronic use, it is true that a person’s physical system can become dependent upon narcotics, meaning that abrupt withdrawal of medication can lead to an uncomfortable withdrawal syndrome. This is very different from psychological addiction, and withdrawal syndrome can easily be avoided by tapering off the medication instead of stopping it abruptly.

Myth: Morphine and other narcotics are useful only for treating pain.

Truth: Narcotics are quite effective in treating shortness of breath. As more and more people with chronic lung disease and chronic congestive heart failure reach a terminal phase of their illness, morphine and other narcotics provide welcome relief from episodic shortness of breath, without worsening the underlying condition.

Myth: Morphine is only used when you are dying, and brings death sooner.

Truth: Morphine (and other narcotic or opioid pain relievers, including codeine, oxycodone, hydrocodone, hydromorphone, fentanyl, and methadone) can be used to treat moderate to severe pain from any cause, when less potent pain relievers such as aspirin, ibuprofen, naproxen, and acetaminophen are not adequate. Morphine is often given to relieve pain in patients who are near death, and in such cases it is just as likely to lengthen life (by allowing the patient to relax and live comfortably) as it is to shorten life (by decreasing alertness and thus decreasing intake of fluids). Generally at that very last stage of life, getting comfortable and staying comfortable to the end become the main goals of the patient, and narcotic medications are very useful in helping the patient meet those goals.

If you have questions about pain and symptom management, talk to your physician or call Hospicare & Palliative Services at 607-272-0212.


Dr. Eric Lessinger was the medical director at Hospicare for 12 years until his retirement in 2014.