Tag: #advancedcareplanning #togetherwearehospicare #letstalkhospice

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.

How to Talk to Your Proxy About Your Advanced Care Wishes

Posted on by Hospicare

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

Jane Segelken, MA, MSW

One thing that’s important to remember when thinking about advanced care planning is that it’s not just about end of life. In reality, it’s about how you’re living now. It’s about making sure everyone is ready to make decisions on your behalf when you’re unable to communicate — even temporarily while you’re recovering from an accident, surgery, or debilitating illness.

Several years ago, 83-year-old Ella fell and severely broke her shoulder. In the hospital and loaded up on pain medication, the usually cognitively sharp Ella was unable to think clearly. She couldn’t understand the surgical options being presented to her and couldn’t communicate which surgery she preferred. Fortunately, she had talked to her legally appointed health care proxy about many different things including how important quality of life was to her. That information, including knowing something about Ella’s hobbies and interests, allowed her agent to advocate for an extensive surgery that allowed Ella to resume all her activities, including driving. Had the proxy not been informed and kept up to date on Ella’s wishes as they evolved, the proxy might have allowed the physicians to perform a lesser surgery that would have severely limited the very active Ella’s independence.

There is no question conversations about our advanced care wishes are hard. Making decisions about future scenarios isn’t easy. It’s scary for us to think about our own misery and it’s daunting for our proxy to consider our suffering. But the talks are totally worth it. In fact, doing so will minimize our distress and give our agent the confidence they are making the right decisions — some of the hardest he or she will ever have to do.

Once you’ve identified the person you want to represent your wishes — someone who can make difficult decisions, can advocate for you, and who knows your values — it’s time to have “The Talk.”

Talking about your advanced care wishes

There is never the perfect moment to begin the conversation. And it may happen over time — in several conversations rather than one. But a good way to start with the person you’ve selected as your agent is to frame it by saying, “I’d like to talk to you about how I want to live.”

  1. Be direct.
  2. Talk about a situation that someone else, such as a friend or relative, has experienced.
  3. Speak about your values — what makes your life worth living?
  4. Discuss what brings you comfort and joy — your interests, likes, and dislikes.
  5. Talk about what health, sickness, and death mean to you.
  6. Talk about pain. Do you want to be able to communicate while being treated for pain even if it means you might still be uncomfortable? Or would you rather be sedated and pain free?
  7. Consider life support treatments and reveal where your views on them come from. Share under what situations you would want to be on life support — such as a device to help you breathe, nutrition and hydration through a tube, CPR, etc. — and when you might want nothing to be done.
  8. Make sure to address your religious beliefs, if any, regarding healthcare decisions.

Part of this discussion should also address care at the end of your life. Things to consider include:

  1. Do you want a religious or spiritual leader to visit with you?
  2. Do you want music, candles, incense, and dim/bright light in the room? Specify the kind of music you like, the candle/incense aroma, and whether the light should be natural or artificial.
  3. Do you want to know when death is approaching so you can tie up loose ends and say goodbye to friends and family?
  4. Where do you want to die (hospital, hospice residence, at home, other)?
  5. Do you want to donate your organs? Are there any limitations?

As time goes by, especially if your health changes, review your advanced care planning wishes. When you’re young, every 10 years is a good benchmark. As you get older you may want to reevaluate even more frequently. Make sure your proxy, family, close friends, and your doctor know of any changes in your preferences.

Resources

The planning you do now will be a gift to your proxy, to those in your life to whom you matter, and to yourself.

Join Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team on March 15, from 5:30-7 for a webinar, Having the Conversations & Organizing Your Info.  To register email jennifer@crcfl.net or call 607-272-0212.

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

How Patients’ Wishes Can Guide Medical Decision Making

Posted on by Hospicare

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

Jane Segelken, MA, MSW

With the new year upon us, one of the kindest favors we can give the important people in our lives is information on the kind of care we wish to receive if we become ill or incapacitated. Letting them know our care plans and wishes in advance is a true act of love. Doing so takes away some of the burden and stress by allowing them to focus on us without the preoccupation of making decisions we haven’t discussed with them.

For anyone over the age of 18, advanced care planning is the process that allows us to make decisions about our future health care. It is a way of providing guidance for decisions that may have to be made when we are unable to make and/or communicate them on our own. The preferences are noted on legally recognized documents; then the choices are communicated to family/friends and health care providers who are appointed to be the decisionmakers.

While we often think about advanced care planning as part of end of life, there are times when you might be unable to make decisions because you are taking medications that make you fuzzy headed or are in severe pain that prevents you from being able to focus. Regardless of whether you are needing someone to assist in an emergency or at the end of life, having someone who knows your wishes almost guarantees you’ll be treated the way you want. Without these legal documents, decisions about your care may be made by healthcare providers who know nothing about your values.

Medical Decisions: Choosing Your Proxy and Talking About Your Wishes

When thinking about who you will have as your proxy, also known as an agent, it’s important to select someone who will honor your wishes. While many people choose a partner/spouse or child, they may not be the best ones to make the difficult decisions. What is key is that the proxy be able to determine the kind of care you receive based on your wishes not theirs. Others who can act on your behalf include a friend, lawyer, or someone in your social or spiritual community. Also, name an alternate proxy. Be sure to ask the people you want to appoint as your agents in advance to ensure they are comfortable with the process.

Make sure you have a deep, detailed, and honest conversation with your appointed agents about how you want to be cared for in a medical emergency or at the end of life. Talk about your thoughts, beliefs, and values so your agent can make the kind of decisions you would if you were able. It’s also important to talk about your decisions with your loved ones and your physicians so they can partner with your proxy. The Five Wishes and My Living Voice programs are two excellent resources to help guide you through the process.

Medical Decisions: The Documents

  • A Health Care Proxy is a legal document that designates the person who will make health care decisions only if you are unable to make them yourself. Because it is difficult to know all the choices that will need to be made, it is important to appoint someone you trust and who knows your core values; make sure he or she hears details about your wishes that go beyond what you have written on the proxy form. Keep the original at home; give copy of the completed document to your appointed agent (proxy), your alternate agent, your primary medical providers, and your attorney if you have one. While some people also prepare a Living Will, it’s important to remember that is not a legal document.
  • A Medical Orders for Life Sustaining Treatment (MOLST) form outlines your wishes for the end of life in the event you cannot make this decision yourself. This form is filled out with and signed by your physician and reviewed at least every 90 days. If you do not have a proxy, the MOLST will guide medical decisions. If you do have a proxy, this document can guide their choices on your behalf.
  • A Do Not Resuscitate Order (DNR) determines what life sustaining measures, if any, you would like if your heart has stopped beating and you are not breathing. While a DNR can stand alone, it is also a part of the more comprehensive MOLST form.

Resources

If you need help connecting to resources, or ideas for how to start this process, please contact Hospicare & Palliative Care Services at 607-272-0212 with any questions or visit their website at hospicare.org.

*This article originally appeared in the Cortland Standard on January 27, 2022, as the first of a 12 column series devoted to topics relating to hospice and Hospicare called “Let’s Talk Hospice”.

UPCOMING ADVANCED CARE PLANNING EVENT

Having the Conversations & Organizing Your Info
March 15, 5:30 – 7:00 pm via Zoom

For help with advanced care planning, attend Having the Conversations & Organizing Your Info, an upcoming webinar with Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team and hosted by the Cancer Resource Center. For more information about this and other event, visit our event calendar.