HOSPICE CARE — Hospice officials said it’s never too early to begin the conversation about end-of-life wishes with a loved one. The agency is also actively seeking volunteers to help care for individuals or perform other tasks that help nurses and other volunteers concentrate on the care given to patients.
Hospice provides gifts of peace, compassion
During the holidays, there are many gifts that people share. While many are wrapped, the most precious gifts — like love and compassion — aren’t found under a tree.
During our holiday celebrations, many of us will pause to think about those who are no longer with us. And, how they impacted us with the gift of themselves.
As we celebrate life this holiday season, and even think about putting in place a few new year’s resolutions, Hospice & Palliative Care, Inc. officials want everyone to think about giving our families the gift of peace of mind.
Before a crisis
The best time to learn about hospice, or end-of-life care, is before a loved one faces a medical crisis. Approximately 1.7 million people receive hospice services each year, according to the Upstate NY Hospice Alliance, and studies have shown that early hospice care can extend a patient’s life expectancy and reduce anxiety for patients and family members.
Hospice provides a continuum of care for loved ones with life-limiting illnesses. A team of doctors, nurses, social workers, grief counselors, chaplains and family caregivers provides an individualized care plan for each patient. Care is focused on pain and symptom management, comfort, dignity and quality of life for the patient, and reducing stress and anxiety.
“Many families do not decide on hospice care until the final weeks or even days of life, possibly missing out on months of quality time with their loved one,” said Caryn Hughes, president and CEO of Upstate NY Hospice Alliance.
“The upcoming holidays present a time to start those discussions earlier about receiving professional, expert care at home, in a nursing home or another health care facility. Ultimately, our hope is to celebrate life and provide opportunities to enjoy quality time with family and friends at the end of life through hospice care.”
Upstate NY Hospice Alliance is a group of 14 regional hospices in 24 counties across upstate New York that work together to educate and inform local communities on affordable end-of-life care. Hospice allows patients to spend their time in a familiar, comfortable environment and offers specialized services for both patients and families.
Hospice care is completely covered by most health insurances, including Medicare and Medicaid, and 44 percent of those eligible choose hospice care. It is intended for individuals with a terminal diagnosis, such as cardiovascular disease, Alzheimer’s disease, dementia, amyotrophic lateral sclerosis (ALS), renal disease, cancer or chronic obstructive pulmonary disease (COPD).
Hospice care offers specialized services for both patients and families, including grief support and caregiver support.
Hospice care is focused on patients:
• With a life expectancy of six months or less;
• Who may have been admitted to a hospital several times within the last year;
• Who prefer to remain at home instead of spending time in the hospital;
• Who are seeking pain and symptom relief rather than on-going curative care.
Hospice & Palliative Care, Inc. in New Hartford CEO Ann Tonzi said it’s important to have the conversation about end-of-life care early to ensure that your wishes are met.
“As far as starting the conversation, I think it’s important for people to have it with the other people in their lives prior to being in crisis, because otherwise you’re more emotional and not always as rational or in a frame of mind to make decisions — especially if you’re leaving things in the hands of those who need to speak for you,” Tonzi said. “Any aging person, or young person — everyone — should have this conversation.”
“You can be very healthy, but then all of a sudden not be. Or it can be an aging parent doing well, but then all of a sudden something happens,” she said. “It’s a challenge for people who are not prepared. I often hear, ‘I wish I had come to Hospice sooner, rather than when I found out that I was sick.’”
Hospice volunteers focus on having patients feel the best they can, for as long as they can. But Tonzi said often times people aren’t prepared to take advantage of all the services Hospice provides.
Home with family
In a national poll, a “majority of people, when asked where they preferred to spend the end of their life, they said home, surrounded by family,” the CEO said. “But only 25 percent of those who say that it actually happens for, so there is a disconnect with communication either with their medical care provider or family. Unfortunately, many people still die in a hospital setting.”
As a new year begins, many people start talking about New Year’s resolutions — things they can do differently to make themselves healthier, whether it be quitting smoking or losing weight. The aging population may also make it a time to fill out their advance directive, but while doing so, Tonzi said that is the perfect time to start that “end-of-life wishes” conversation.
Those conversations — “they’re not easy to have. Families are looking to doctors to help and fix things, and it’s very difficult for them when that is not possible anymore,” she said. “You need to ask yourself, ‘What do you anticipate you can deal with in the wake of illness? What could you stand to live without and what you can’t (live without)?’ Make it a goal at the beginning of the year to make decisions to be as comfortable at the end of life that you can be, even if you’re not diagnosed with a life-threatening disease. Death is something we all face — it’s inevitable no matter what. That’s why it’s so important to address and talk about it.”
A Hospice team works with a patient to extend their life quality and make them comfortable for as long as possible. If a patient wants to make it to their child’s graduation, while it may not be easy, volunteers work with the individual, Tonzi said. Or if they want to still be able to go out and play golf or stay at home, rather than be in a hospital, it’s the volunteers’ goals to make that happen. However, often they see patients too late to help them see those wishes through, she said.
“Unfortunately, we’re seeing people so late that that time is gone,” Tonzi said. “They’re in crisis, so it becomes time to support them and their families in those final days. But we’re (Hospice) so much more than that.”
“We have an interdisciplinary team to support a family in following those final wishes,” she explained. “You may want something, but your family may not agree with it. So we work with all caregiving support. We really rob people of their final days when we don’t have these conversations and don’t try to move them to a place of awareness. If someone knows they have days versus weeks, we may rob them of what they wanted to do or who they wanted to be around and see one last time.”
Support for those nearing the end of life wouldn’t happen without Hospice’s trained team of volunteers. Those who can give a little of their time are always needed, and they don’t necessarily have to work directly with patients if they choose not to.
Tonzi said the start of a new year may also be a good time for people to begin thinking about how they can give back to their community. Or, they may be looking forward to retirement and figuring out how they can keep busy with some of their spare time.
“Our volunteers can run errands, help in the office or at events, they can walk dogs, mow lawns, or they can be at bedsides if they choose,” Tonzi said. “No matter how they wish to give their time, there is usually a place for them at Hospice and it’s such a rewarding experience.”
“Most volunteers would say it’s a very bright part of their day,” she said. “It makes them feel very grateful and fulfilled they’re doing something good, and it’s meaningful even if it’s volunteering in the office, it helps us give others the support they need. I think people are changed forever, even if they just go through the training, it enhances you as a person. You can’t work here without it changing you in some way. You’re being giving of yourself but getting so much more back. People think of Hospice and yes there’s a lot of sadness (in dealing with death), but there’s a lot of gratitude and story telling as well. You get to learn a lot from the people you’re involved with.”
Those wishing to volunteer with Hospice must fill out an application and complete an 18-hour training course. For more information about volunteer opportunities and how to become a volunteer, call 735-6484, 1-800-317-5661, or go online to http://www.hospicecareinc.org/volunteer.