Category Archives: Press Releases

Dying With Dignity – The Case That Changed Dying

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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 

John Quinlan, director of the Karen Ann Quinlan Home for Hospice Foundation and Karen’s brother, explains how the home has become his sister’s legacy.

How the Karen Ann Quinlan case in NJ transformed the national debate on end-of-life choice

Karen Ann Quinlan fell into a coma in 1975 and died 10 years later. The legal fight between those dates shaped Right to Die laws in NJ and the nation

Caregivers Need Help

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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

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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”!

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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

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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:

  1. There are 76.4 million Baby Boomers living in the US and 20% of them do not have children to act as caregivers
  2. 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
  3. 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.
  4. 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/

Welcome Home Vietnam Veterans Day

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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?

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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

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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.

FREE Workshop! Supporting Life’s Final Chapter: Becoming a Death/End of Doula

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🌟 Supporting Life’s Final Chapter: Becoming a Death/End of Life Doula🌟

Are you curious about the profound and meaningful work of a death/end-of-life doula? This workshop is your opportunity to explore this transformative path and discover if it resonates with your passion and purpose.

✨ What is a Death/End-of-Life Doula, and what do they do?

✨ Are doulas new?

✨ How are doulas different from hospice care?

✨ Why do we need doulas if we already have hospice?

✨ Is this calling for you? How to know if it’s the right fit.

✨ Can you make a living as a doula?

✨ Are Certifications Needed? What about Accreditations?

✨ What should I consider when choosing the right end-of-life doula program for me?

🎓 Special Feature: Get inspired with a real-life case study from an IDLM graduate, highlighting the impactful role of a doula in action.

🗓️ Date: January 13, 2025

⏰ Time: 6:30 PM CST

📍 Location: Online

💻 Register here: https://us06web.zoom.us/meeting/register/tZUtc-CorDMiGtycGZF72dVDFwtLLsJ3icQ7

Start your journey into a world of compassion, care, and purpose. 💚 For more information on the upcoming in person End-of-Life Doula training in Sussex County please give us a call at 973-782-1255 or visit: https://bit.ly/IDLMTrain.

Make Your Wishes Known

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The NHPCO helps decode Advanced Care planning documents

Over time, several types of documents have emerged to help you express your wishes for treatment any time you are unable to speak for yourself, particularly during serious illness or end of life.

Certain words, like “Living Will” and “Advance Directive”, are used interchangeably when they should not be.

Others, like “Healthcare Power of Attorney”, have about five different names.

None require the advice or services of an attorney to create. Some are legal documents, some are medical orders some are valid outside of the hospital and some are not. Some everyone should have and others are applicable only towards the end of life. All, however, are only useful if they are accessible when you need them and if the person you have authorized to speak for you is empowered to do so. Let us help you sort it out.

What are Advance Directives?

Advance Directives are a set of documents that both appoint a person to speak for you and contain your preferences for medical treatment. Each state has its own Advance Directive with the language and content that state deems important.

All Advance Directives must include at least two sections:

  1. A statement of your preferences for medical treatment (or not), also known as a Living Will and
  2. The appointment of a person to speak for you if you are unable to, also known as a Healthcare Agent.

In other words, a Living Will is one component of an Advance Directive.

Advance Directives may also contain instructions around organ donation, appointment of a guardian, and other matters.

Are Living Wills the same as Advance Directives?

A Living Will is a statement of the type of care you prefer if you are not able to speak for yourself. It is important to understand that living wills only apply to your healthcare wishes; you will need something called “a last will and testament” to express your wishes about what to do with material goods.      

While each state has state-specific Advance Directive form, there aren’t separate state-specific Living Will documents because the information contained in a Living Will is already part of the Advance Directive.  Nonetheless, just to make things even more confusing, a lot of the websites that offer “‘free”’ legal forms online incorrectly refer to Advance Directives as Living Wills. A Living Will, without having appointed someone to speak for you, is of limited value. Frequently, the decisions that need to be made are not specifically addressed in the Living Will. Your Healthcare Agent is in the best position to know what you would want and is authorized to speak for you.

What are Healthcare Powers of Attorney?

A Healthcare Power of Attorney can be both a person and a legal document. The legal document appoints and authorizes someone to speak for you when you cannot and must be witnessed or notarized, depending on where you live. The person, the Healthcare Power of Attorney, may also be known as a Healthcare Agent, Healthcare Proxy, Healthcare Surrogate, Healthcare Attorney in Fact, or Healthcare Representative. Each state has its own Healthcare Power of Attorney form, which is embedded in that state’s Advance Directive.

What are DNRs?

Do Not Resuscitate orders (DNRs) are medical orders written by a doctor. They instruct healthcare providers not to do cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. If presented, they will be honored by EMTs. 

They may be part of a POLST but can also be their own form.

What are POLSTs?

POLST is an abbreviation for Physician’s Orders for Life-Sustaining Treatment. POLSTs are forms that consist of a set of medical orders that applies to a limited population of patients, such as seriously-ill or frail persons, and address a limited number of critical medical decisions.

A POLST has the option of specifying Do Not Resuscitate (DNR) but also makes provisions for other types of treatment such as feeding tubes and mechanical ventilation. They will be filled out in consultation with your doctor. POLSTs are state-specific and are specifically for the seriously ill or frail. If presented, they will be honored by EMTs.

POLSTs do not appoint someone to speak on your behalf like Advance Directives do.

Your Healthcare Agent is the person that can speak for you when you cannot; they are your legal representative and the doctors must listen to them. However, it is also useful to fill out a HIPAA Right of Access to Healthcare Information for anyone you want involved in your care.

What is a HIPAA Right of Access to Healthcare Information?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge. Keep in mind, if you have several people that you would like to be empowered to speak with your doctors they will each need an authorization.

What do I need to decide?

There are three decisions to make and actions to take that will help you get what you want (and not get what you don’t want) when you are unable to speak for yourself. The decisions, and their respective tasks, fall into:

  • Deciding on and appointing someone to speak for you when you can’t
  • Getting clarity about what you want and don’t want. This includes giving specific instructions around resuscitation, ventilation, and feeding if appropriate for your stage of life.
  • Telling your agent and others what you want, writing it down, and having the information available when needed

National Hospice and Palliative Care Month

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November is National Hospice and Palliative Care Month. Announced in 1978 by then President Jimmy Carter, November is a time to raise awareness about the importance of hospice and palliative care services, and to honor the caregivers and healthcare professionals who provide them. While HAPCM is a brief window of time meant to spotlight the importance of hospice and palliative care, helping the public understand the benefit of this type of serious-illness care and the importance of advance care planning are goals which our community should strive for year-round.

Some key observances during the month include:

-National Family Caregiver’s Day: November 1

-Palliative and Advanced Care Week: November 4-8

-Hospice Week: November 11-15

-Home Health Week: November 18-22

-Private Duty Home Care Week: November 25-29

Hospice care enables the individual and their families to experience the final stage of life together, in the setting most comfortable for them. In most cases, the person remains at home, close to family and friends while under professional medical supervision, but hospice Research shows that families of hospice patients are more likely than non-hospice patients to report that their loved ones had their end-of-life wishes fulfilled.