Saying Goodbye at the Bedside
In a recent story titled “Saying Goodbye at the Bedside,” by Barbara Karnes, RN, Award Winning End-of-Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner, and International Humanitarian Woman of the Year for 2018 & 2015, she talks about what you can do when you are with your loved one at the end-of-life. It’s an inspirational read which addresses topics you may be thinking and doing and gives you ideas of what you can do in those final, sacred moments with your loved one. Read the full story by Karnes here: https://bit.ly/41yjrWa
Barbara’s blog, “Something to Think About: A blog on the end of life,” which has a collection of valuable stories and end-of-life education materials for families and professionals, can be found here: https://bit.ly/3J2PW8N
Report Finds 45% Increase in Americans Providing Care, How Can You Help?
In a recent story published by AARP, research shows the number of family caregivers has jumped to 63 million Americans, representing a 45 percent increase, or nearly 20 million more caregivers, over the past decade, according to a joint report by AARP and the National Alliance for Caregiving (NAC). This means roughly 1 in 4 American adults are caregivers, with 59 million caring for adults and 4 million for children under 18 with an illness or disability.
The new report, Caregiving in the US 2025, is a near 30-year research series that provides a comprehensive look at the state of caregiving in America, revealing how caregivers are taking on more complex responsibilities, often at the expense of their own health and financial security. Today’s family caregivers are younger, more diverse and more likely to be juggling multiple roles, with nearly a third caring for both children and adults.
Many of us know someone who is a caregiver or you may be a caregiver yourself. Many caregivers feel alone, helpless, confused, unprepared, tired and unable to provide for the needs of their family member or friend. Many caregivers put the loved one that they are caring for first all the time, which puts strain on their own mental and physical health. Often, people caring for another need help and do not know how or who to ask.
There are many ways to help support a caregiver…
Ask the caregiver how they are doing:
Acknowledge what they are going through and let them know you respect their privacy, but care about them and want to offer support and a listening ear. Caregivers tend to experience “caregiver’s guilt,” which is a feeling that they think they aren’t doing enough. Give them strength by reassuring them that they are doing everything possible for the person they are caring for.
Spend time with the person who is sick or injured:
Family caregivers are often the only link the care receiver has with the outside world. Offering to spend time with the person can be a gift to both the care receiver and caregiver. Bring a book or newspaper to read aloud, a game to play, a craft to do together, photos to share, a good movie to watch, or just a friendly ear for a conversation. And plan to stay a while, it will be appreciated more then you know.
Offer specific help:
Don’t say “call me if you need me,” it is too vague and may not appear to be a sincere offer to help. Often caregivers do not want to be a bother or may not feel they have the time to make a call, as it is one more thing for them to do. Be specific: tell the caregiver you are going grocery shopping and ask them what can you pick up for them, offer to make a phone call for them, cook a meal for the caregiver and care receiver a day or two each week (pick the days and stick to it, that’s one less thing the caregiver has to worry about those days), sit with the person who is ill, do research to find local and legitimate resources that would be helpful for the caregiver given their situation, take care of the person who is ill overnight, if you are able to do so, giving the caregiver a much needed overnight break or go with the caregiver to appointments and help the caregiver get the care receiver into and out of the appointment. You never realize how helpful a second set of hands is when you are taking someone who is dependent on you out of their home to appointments.
By offering to do something specific, you are communicating that you are really willing to help the caregiver. If you call the caregiver and they don’t answer, text them. Sometimes caregivers feel so burned out they don’t want to answer the phone or can’t answer the phone and texting is a quick way for them to respond back to you when they have a moment. They will be thankful you reached out and want to help in whatever way you can.
Dying With Dignity – The Case That Changed Dying
40 years after Karen Ann Quinlan’s death, NJ right-to-die case still stirs strong emotions Click Here to read story
In photos, revisit Karen Ann Quinlan right-to-die trial that captivated nation Click Here
Legacy of Karen Ann Quinlan’s death is more end-of-life care options for NJ residents Click Here to read story
Director of Foundation, John Quinlan, explains Karen Ann Quinlan Home for Hospice pioneering role in hospice care. Click here
Director of Foundation explains the pioneering role Karen Ann Quinlan Home for Hospice plays
How the Karen Ann Quinlan case in NJ transformed the national debate on end-of-life choice
Caregivers Need Help
According to the National Alliance for Care at Home, a survey of 400 family caregivers ages 22 to 44 found that many millennial and Gen Z unpaid caregivers in the United States need more support from home care and hospice providers. The most common and urgent needs of the caregivers, according to the report from Transcend Strategy Group, included education in elder care and support and expertise in end of life care and decision making.
Evidence of the burden on these younger caregivers is demonstrated in these responses:
-90 percent said caregiving is emotionally and mentally taxing;
-84 percent said caregiving is a significant financial burden;
-70 percent are unsure they’re providing quality care to the person they’re caring for.
Getting more information matters to these caregivers, but so does how they receive that information. One-on-one conversations between caregivers and clinicians are the most preferred way for home care providers to guide unpaid caregivers, according to the survey, but education and support can also be provided via videos, written materials and social media.
“Respondents generally prefer to have a conversation with a medical professional when receiving healthcare information,” reads the report. “However, those aged 22 to 32 were more likely to prefer social media videos provided by content creators compared to those 33 to 42.”
A particular area of need for these younger caregivers is end of life care, beginning with education. One third of caregivers in the survey believe hospice care increases the likelihood of death for the patient or makes death occur more quickly. Fixing those misconceptions would begin to improve end of life care for these patients.
Caregivers, of all ages, need to know that with hospice care comes an entire team of people to help them and educate them. In addition to our team of nurses, who are available 24 hours a day, hospice offers social workers and counselors to provide emotional and practical help. Chaplains offer spiritual support as requested. Certified home health aides help by providing patient physical care and hygiene and training the family caregivers on best methods as well. Trained volunteers offer assistant and companionship for the patient and family.
Caring for yourself as your loved one’s caregiver is one of the most important things you can do. Karen Ann Quinlan Hospice supports the family in conjunction with the patient. Hospice can arrange extra relief for caregivers who must work, travel or rest for a period of time. The special help includes extended hours of home health aide care or the temporary placement of the patient in a respite care facility.
How do you know if you or your caregivers could benefit from hospice care?
- You or your caregivers are physically and/or emotionally exhausted from caring for you or your loved one.
- Your family is feeling isolated because of caregiving demands or the uncertainties you feel about your loved one’s future.
- You or members of your family appear to need emotional support to cope with the situation.
- You are overwhelmed by the physical, financial, emotional and spiritual concerns arising because of the illness.
Hospice care enables the individual and their families to experience the final stage of life together, in the setting most comfortable for them. Each team member is focused on the person, not the illness, making sure that all physical, emotional and spiritual needs are met.
Home Care and Hospice Association of New Jersey presents Awards
On Wednesday, June 5, at the Annual Home Care – Hospice Conference & Exhibition held in Atlantic City the Home Care and Hospice Association of New Jersey presented the Martha Esposito Award to Lee Ellison.
Ellison was recognized for outstanding contribution to the hospice industry through pioneering the End-of-Life Doula (EOLD) movement at Quinlan Care Concepts by establishing their Navigators program. In collaboration with International Doula Life Movement the organization has trained 31 End-of-Life Doulas to date. This groundbreaking initiative, led by Ellison, provides crucial emotional, spiritual, and physical support to patients and families before, during and after end-of-life transitions, focusing on advance directives, grief support, legacy projects, holistic comfort care practices and normalizing the conversation about death and dying.
“25 years ago Julia Quinlan received the Martha Esposito award for her work in the hospice industry. It’s such and honor to receive this award as we celebrate 45 years of serving the community – continuing her work with innovative and pioneering programs to help our families,” said Ellison.
“End-of-life doulas have been in existence since the beginning of time. Introducing them in home care and hospice is a natural progression. We can all work together to normalize the conversation about death and dying because a life well lived deserves a good death. We’re all going to die, but we don’t know when, where, or how. What we can do is prepare and that’s were our Quinlan Care Navigators and end-of-life doulas come in,” said Ellison.
Mary Pradilla was presented the Carol J. Kientz Member of the Year Award at the the Conference. The award was given to a member who has gone above and beyond the benchmark of involvement in and commitment to the Home Care & Hospice Association of NJ and it’s work to serve as a catalyst for excellence in home care and hospice in New Jersey.
For more information about the Quinlan Care Navigators program please visit: quinlancare.org. If you are interested in becoming an end-of-life doula, the next in-person class starts on August 23 and information can be found online at Quinlancare.org/Navigators or by calling 973-782-1255.
Best of Sussex County Community’s Choice Awards…. Vote for KAQ for “Best Hospice”!
It’s time to VOTE! Please vote for Karen Ann Quinlan Hospice for “Best Hospice” in the Best of Sussex County Community’s Choice Awards!
Karen Ann Quinlan Hospice is an award winning organization and has been a leader in providing Hospice care since 1980.
The hospice founders, Julia and Joseph Quinlan were pioneers in the hospice industry and in the forefront of bringing hospice comfort to our nation. Read more about Karen Ann Quinlan and the NJ landmark case that started a movement.
Our professional team of medical doctors, registered nurses, certified health aides, social workers, counselors, pharmacists, and trained volunteers make available medical, emotional, personal and spiritual care for the patient and the patient’s caregivers.
We are proud to be part of a community that supports and encourages us as we have grown and developed along with our neighbors. We provide the most up to date hospice care methods and our staff participates in the Federal QAPI (Quality Assurance and Performance Improvement program), which measures hospice quality and performance.
We are a non-profit organization licensed by both the New Jersey Department of Health and the Pennsylvania Department of Health and we are Medicare and Medicaid Approved. The Community Health Accreditation Program (CHAP) also accredits the hospice.
CAST YOUR VOTE HERE: yourchoiceawards.com/sussex/
National End of Life Doula Day – April 20th
National End of Life Doula Day (or National Death Doula Day) is observed on April 20th every year. This day aims to raise awareness about the role of end-of-life doulas and the benefits they provide to individuals facing death and their families. Doulas offer holistic support, including physical, emotional, and spiritual care, helping to navigate the end-of-life journey with compassion.
- What is an End-of-Life Doula?An end-of-life doula is a non-medical professional who provides support to individuals facing death, their families, and friends. They offer comfort, guidance, and advocacy throughout the end-of-life process.
- Why is National Death Doula Day Important?This day helps raise awareness about the valuable role end-of-life doulas play in providing compassionate and holistic care during a difficult time. It also encourages conversations about end-of-life planning and dying well.
Why we need End-of-Life Doulas now more than ever:
- There are 76.4 million Baby Boomers living in the US and 20% of them do not have children to act as caregivers
- 9/10 people want to be kept at home if they become terminally ill – yet over half are dying in the hospital or long-term care facility
- In 2034, adults aged 65 and over will outnumber children aged 18 and younger for the first time in US History. The number of people aged 65 and over is projected to increase from 52 million in 2018 to 98 million by 2060.
- As the number of elderly people is increasing, the number of medical professionals is decreasing. The US could see a shortage of 120,000 physicians ad will need 12 million new nurses by 2030.
- What do End-of-Life Doulas Do?They may assist with:
- Emotional support: Providing comfort and understanding to those facing death and their loved ones.
- Spiritual support: Assisting with finding meaning, peace, and connection during this time.
- Family support: Helping families navigate the emotional and practical challenges of end-of-life care.
- Advocacy: Helping ensure the individual’s wishes and preferences are honored.
- How to Celebrate National Death Doula Day?You can celebrate by:
- Learning more about end-of-life doulas and their work .
- Sharing information about the day with your network .
- Supporting end-of-life doulas and organizations that provide this care.
Quinlan Care Concepts partners with International Doula Life Movement to offer comprehensive EOL Doula training to all members of the Quinlan Care Navigators team. To learn more about becoming an EOL Doula please visit: https://www.internationaldoulalifemovement.com/newjersey-death-end-of-life-doula-specialist-program/
45th Anniversary Gala Photo Gallery
The winning event journal number is 5394. If you found that number hidden your your event journal, please contact Jennifer Smith at 973-383-0115 during normal business hours – Monday – Friday. Thank you for your support of our hospice mission. Click here to see more photos.
Welcome Home Vietnam Veterans Day
Karen Ann Quinlan Hospice welcomed and gave thanks to all the Veterans that joined us at the “Welcome Home Vietnam Veterans Day” luncheon and ceremony. All Veterans, including all branches and service periods, are always welcomed at this event. The Vietnam War Veterans Recognition Act designates March 29 of each year as National Vietnam War Veterans Day, although states celebrate “Welcome Home Vietnam Veterans Day” on March 29 or 30 of each year.
Hospice Care, What Is It?
What is Hospice?
Hospice helps patients and families focus on living. Hospice care brings comfort, dignity, and peace to help people with a life-limiting illness live every moment of life to the fullest. It also reaches out to provide support for the family and friends who love and care for them.
Hospice provides expert medical care, pain management, and emotional and spiritual support. With Hospice comes an entire team that works together focusing on the patient’s needs whether physical, emotional, or spiritual. Support is provided to the patient’s loved ones as well.
The goal is to keep the patient as pain-free as possible, with the loved ones nearby. Addressing pain and other symptoms in their early stages, rather than waiting until they become severe, is a priority. In addition to determining the appropriate medications for pain and other symptoms, members of the care team identify the best ways to administer the medication to the satisfaction of the individual patient.
When is the right time for Hospice?
A growing number of caregivers are finding that the correct answer to the question is, “As early as possible,” as they discover all of the advantages hospice has to offer the patient as well as the caregivers. Hospice professionals are specialists in end-of-life care, and should be called upon during the first stages of a terminal illness.
Our hospice staff is trained to offer peace of mind in addition to medical care. We hear it so many times, patients and families tell us: “We wish we’d called hospice sooner.” Patients and families can benefit most from hospice care when they seek support earlier rather than in a crisis.
Special needs require the services of specialists. Hospice professionals are specialists in end-of-life care, and should be called upon during the first stages of a terminal illness.
Who is on the Hospice Care Team?
A Hospice team usually consists of:
- Chaplains or other counselors
- Certified Home Health Aides
- Hospice Physicians
- Nurses
- Social Workers
- Volunteers
- Bereavement Counselors
Often times, patients choose to have their primary doctor involved in hospice care. Both the primary doctor and the hospice medical director may work together to coordinate the patient’s medical care, especially when symptoms are difficult to manage.
In most cases, Hospice care is provided in the patient’s private residence, but may also be provided in freestanding hospice facilities, hospitals, nursing homes, assisted living facilities, or other long-term care facilities.
Although hospice provides a lot of support, the day-to-day care of a person receiving hospice care is usually provided by family, friends, or privately paid home health aides. The hospice team coaches caregivers on how to care for the patient and even provides respite care when caregivers need a break.
While family members are usually the primary caregivers for hospice patients, members of the hospice staff make regular visits to assess the patient and provide additional care or other services and hospice staff are on-call 24 hours a day, seven days a week.
What services come with Hospice care?
Hospice offers social workers and counselors to help the family make emotional adjustments to the illness and its progression. They also can offer guidance in living wills and advance directives. Chaplains offer spiritual support as requested. Certified home health aides help by providing patient physical care and hygiene. Trained volunteers offer assistance and companionship for the patient and the family. Therapists, dieticians, special equipment needs and pharmacists are also available.
Other important benefits that come with hospice to keep in mind:
- Management of pain and other symptoms
- Assistance for patients and loved ones with the emotional, psychosocial, and spiritual aspects of dying
- Medications and medical equipment
- Instructing the family caregivers on how to care for the patient
- Grief support and counseling to the patient as well as the surviving family and friends for up to 13 months after death
- Hospice meets patients where they are, whether that is in a skilled nursing home, assisted living facility, hospital, the home of a loved one or in their own home.
- Hospice patients and families can receive care for six months or longer.
- To get the most out of what hospice offers, it’s better to have care for more than just a few days.
The best time to learn about hospice is BEFORE you or your loved one needs it.
Six Months or Longer
Former President Jimmy Carter died recently at the age of 100 after being on Hospice care for nearly two years.
How can that be? According to Medicare guidelines, to qualify for hospice under Medicare a patient must have a prognosis of six months or less to live if the disease runs its normal course. What if a patient lives longer then six months… won’t they lose hospice care?
Not necessarily.
Hospice patients and families can receive care for six months OR LONGER. In August 2023, President Carter reached the six-month milestone on hospice and continued to enjoy time with his family and loved ones in his hometown of Plains, Georgia.
Some patients outlive their prognosis, and in those cases the patient can be recertified for continued hospice care. You can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods.
Studies have shown that hospice patients tend to live longer than patients with similar diagnoses who do not choose hospice care. Research also shows that hospice care—at any length of stay—benefits patients, family members, and caregivers, including increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief and other emotional distress.
Hospice care focuses on quality of life when a cure is no longer possible, or the burdens of treatment outweigh the benefits. Some people think that their doctor’s suggestion to consider hospice means that death is very near. That is not always the case. In fact, people often don’t begin hospice care soon enough to take full advantage of the help it offers.
Talk with your doctor if you think a hospice program might be helpful for you or a loved one.
One last thing to keep in mind, it is possible to leave hospice care if a patient’s condition improves or they decide they wish to resume curative care and return to hospice care later.