Karen Ann Quinlan Hospice Reminds the Community that “#SoonerIsBetter!”
(Newton, NJ) – November is National Hospice and Palliative Care Month and hospice and palliative care programs across the country are reaching out to raise awareness about hospice and palliative care. Hospice is not a place but is high-quality care that enables patients and families to focus on living as fully as possible despite a life-limiting illness. Palliative care brings this holistic model of care to people earlier in the course of a serious illness.
“Every year, nearly 1.4 million people living with a life-limiting illness receive care from hospices in this country,” said Edo Banach, president and CEO of the National Hospice and Palliative Care Organization. “These highly-trained professionals ensure that patients and families find dignity, respect, and love during life’s most difficult journey.”
Hospice and palliative care programs provide pain management, symptom control, psychosocial support, and spiritual care to patients and their families when a cure is not possible.
Hospice and palliative care combines the highest level of quality medical care with the emotional and spiritual support that families need most when facing a serious illness or the end of life.
Throughout the month of November, Karen Ann Quinlan Hospice will be joining organizations across the nation hosting activities that will help the community understand how important hospice and palliative care can be.
More information about hospice, palliative care, and advance care planning is available from Karen Ann Quinlan Hospice by call 973-383-0115 or visiting our website at KarenAnnQuinlanHospice.org or from NHPCO’s CaringInfo.org.
Vides and stories from families showing the many ways hospice and palliative care make special moments possible can be found at www.momentsoflife.org.
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:
A statement of your preferences for medical treatment (or not), also known as a Living Will and
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
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.
Conversations about death, dying and facing one’s own mortality are difficult topics. The checklist of things to get accomplished when there is limited time available can seem overwhelming. Navigators, End-of-Life Doulas (EOLDs) are available to ease your fears, address your questions and provide education and support. The program, launched by Quinlan Care Concepts, is staffed by graduates of International Doula Life Movement (IDLM) who are available to provide compassionate, non-judgmental, non-medical support to individuals and their families nearing the end-of-life.
Recent graduates of the IDLM/Quinlan Care Concepts End-of-Life Doulas Specialist program include (from l to r): Amy Lockhart Hayowyk, Diane Barrett Kebles, Robyne Hopler, John Quinlan, Stacé Schimpf, Lorri Opitz, Elise Varesi-Selitto, Tracey Jaworski-Lucas, Darlene Davis and Anna Adams, Founder of IDLM
Participants in the Navigators program do not have to be on our Karen Ann Quinlan Hospice or Quinlan Palliative Care programs to use the service. The Karen Ann Quinlan Friends of Hospice, a philanthropic group, provided the funding for the training and certification of participants in the program. The certification included over 70-hours of specialized training. After two cycles of training the Navigators program will be staffed with more than 20 IDLM trained EOLD’s. More trainings will be offered in 2025 to staff, volunteers and those in the community who are interested in the program.
“This is how we give back to the community that has supported us for more than 44 years,” said Lee Ellison, Director of Marketing and Media at the organization and a Navigators, EOLD. “End-of-life doulas bridge gaps in care and can help create legacies, conduct rituals, plan vigils, lead guided visualizations and lend a helping hand when needed.”
“We can start as early as when anyone wants to talk about their death and figure out advanced directives or end-of-life wishes,” Ellison said. “We can also offer support when someone is no longer conscious to help their loved ones understand the process, educate them about what dying looks like, and then remain with them afterward to talk about the grieving process.”
The services provided by Navigators, EOLDs can include legacy projects, such as helping create memory books, stories or recordings designed to preserve memories, reflect on life experiences, and leave a lasting impact message that honors the person’s life and values.
EOLDs also offer emotional support which includes companionship and support to the dying person and their family and loved ones, helping them navigate their feelings and fears about death. “We also assist with practical matters by providing resources about end-of-life options and facilitating communication between loved ones,” said Ellison.
An EOLD is an advocate for the patient and family providing education about the dying process and what to expect while providing empowerment to make informed decisions. The EOLDs in our Navigators program personalize support based on individual needs, beliefs, and desires for how you, your family and loved ones wish to experience the end-of-life. We work to enhance the quality of the dying journey and ensure it aligns with your personal values and preferences. While EOLDs support those who’ve arrived at the end of their days, they can also make those final moments something their loved ones will carry forward and treasure.
We understand that you may have questions and look forward to providing support. For more information about the Quinlan Care Concepts Navigators EOLD Program please call us at 973-506-8233 or online at QuinlanCare.org/Navigators.
Our mission: Quinlan Care Concepts/Karen Ann Quinlan Hospice is a not-for-profit, organization which provides a full continuum of high quality medical, emotional and spiritual services to hospice patients, their family members and the community.
Hospice provides support and comfort for people who need end-of-life care. Opting for hospice care is one of the most compassionate decisions you will ever make.
You can receive hospice care in your own home, a residential facility, such as the Karen Ann Quinlan Home for Hospice in Fredon, or in assisted living centers, nursing homes and hospitals. Some patients receive care in the homes of friends or family.
According to the Hospice Foundation of America, a third of all Americans choose hospice care when they are dying. But hospice isn’t only for the dying. Loved ones also benefit from hospice care, as the hospice team will support them through some of the most difficult moments in life.
Here are some of the support services you can expect from Karen Ann Quinlan Hospice:
• Every patient who receives hospice treatment must be qualified by a physician; all care is directed by your primary physician.
• Nursing care and services are provided by or under the supervision of a registered nurse. At Karen Ann Quinlan Hospice our nursing staff is available to patients and families 24-hours a day.
• Social Services are provided by a qualified social worker under the direction of a physician.
• Assists the patient and family members with the emotional, psychosocial, and spiritual aspects of dying
• Guides the family on how to care for the patient
• Offers short-term inpatient care when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time
• Our hospice Medical Director will oversee the general needs of the patient working in tandem with the attending physician which includes palliation and management of the terminal disease and related conditions.
• Home Health Aides provide personal care services. Aides’ services are provided under the general supervision of a registered nurse.
• Chaplain Services are available to provide/facilitate spiritual counseling.
• Volunteer services are available to assist the patient/caregiver in any one of a multitude of ways from providing comfort and respite to the family, an avenue of socialization for the patient; assistance with shopping, etc. All volunteers have completed a Karen Ann Quinlan Hospice training course.
• Bereavement Services are provided for 13 months following the patient’s death to family and significant others. Additionally, the Joseph T. Quinlan Bereavement Center holds bereavement and grief recovery support groups in all the communities served by Karen Ann Quinlan Hospice.
• The staff at Karen Ann Quinlan Hospice 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. The best way to determine if you or your loved one could be helped by hospice is to call us at 800-882-1117.
In a recent story published by the NHPCO, they addressed the question, “What is a Death Doula?”
While hospice and palliative care provide physical end-of-life care for patients and their loved ones, a death doula — or end-of-life doula — can enhance traditional care by offering an additional layer of support. Death doulas provide non-medical emotional, spiritual, and physical support to individuals who are transitioning to death, and their loved ones.
As hospice and palliative care focus on pain and symptom management for patients and their loved ones, death doulas can often help those facing the end of life achieve a better death by allowing them to live the time they have left with purpose and companionship.
The word “doula” originates from a Greek word meaning “a woman of service,” and was later adopted by those guiding women through their birth process in a term used widely today: birth doula. The titles “death doula” or “end-of-life doula” are the most common terms for the type of practitioner described here, but you may also hear a death doula referred to as a death midwife or an end-of-life coach.
Central to the doula’s role is non-judgmental, holistic support that empowers patients and their loved ones to make the choices they want for their death experiences and to do so surrounded by the support they need. Doulas work to create and hold space for the needs and wishes of the dying while at the same time using their expertise to bring perspective, greater meaning, and comfort to the dying process.
Who can benefit from a death doula? Anyone nearing the end of life can benefit from a death doula, and death doulas can begin working with patients and/or their families at any point in the death process. Some will choose to engage with an end-of-life doula as soon as they learn of a terminal diagnosis or receive a prognosis with limited time, though doulas are not bound to the six-month-or-less prognosis that hospices must abide by. Others will choose to integrate a death doula when they are closer to death, using their services for emotional and spiritual peace during a more difficult phase. Others still may engage a doula after the death of a loved one for support through the grieving process.
Doula services can be provided alone or in conjunction with traditional healthcare services—like hospice care and palliative care—to enhance the patient and family’s experience.
What services might a death doula offer? The services that each doula offers depend on their skill set and training. Below are some of the core services an end-of-life doula may provide, though this list is not exhaustive. If you’re looking for a death doula that is right for you or your loved one, be sure to ask which services they furnish to ensure they can meet your unique needs.
• An explanation of common signs and symptoms of the dying process, as well as their meanings • Help exploring the meaning of the dying person’s life and legacy • An open ear to receive the frank thoughts of the dying, and provide counsel if requested • Companionship during the death process – many doulas sit vigil so those in the death process are not alone • Appropriate, comforting touch and massage • Caregiver assistance and respite as well as emotional support • Referrals for patients and family members to additional community resources or care providers, as needed • Practical support through errands, household help, transportation, etc. • Grief support for the bereaved
NEWTON – May 22, 2024 — Karen Ann Quinlan Hospice, a division of Quinlan Care Concepts has been named a 2024 Hospice CAHPS Honors Award recipient by HEALTHCAREfirst, a leading provider of CAHPS and bereavement survey programs for home health and hospice agencies. This prestigious annual review recognizes agencies that continuously go above and beyond in providing high-quality care for patients and compassionate caregiver experiences. It acknowledges the highest performing agencies by analyzing the performance of the Hospice Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey satisfaction and quality measures.
To be considered for this award, the hospice agency must have scored above the HEALTHCAREfirst National Performance Score on the Hospice CAHPS Willingness to Recommend question. Once that criteria is met, performance is evaluated utilizing a set of 23 additional quality indicator measures. These scores are then compared on a question-by question basis to a national performance score calculated from all partnering hospices contained in HEALTHCAREfirst’s Hospice CAHPS database. Special recognition, Honors Elite, is awarded to those hospices that score above the national performance score on 100%, or all twenty-four, of the evaluated questions.
“We began our Annual Hospice Honors Award program more than ten years ago as a way to highlight those agencies that are truly leading the way in providing and demonstrating quality patient care,” said Jeremy Crow, Head of RCM and CAHPS Survey, Home Health and Hospice.
“We congratulate Karen Ann Quinlan Hospice, New Jersey and Pennsylvania on this recognition and are so proud and honored that they have chosen to partner with us in helping drive success for their agency.”
Woody Hungarter, RN, BSN, MS, President credits the entire staff at Karen Ann Quinlan Hospice for this outstanding accomplishment. He said, “We are honored to be one of three Hospice Honors Elite recipients in Pennsylvania and one of two Hospice Honors recipients in New Jersey. To achieve “Elite and Honors” status validates the exemplary care extended to our community by our dedicated team.”
Karen Ann Quinlan Hospice a Division of Quinlan Care Concepts is an independent and local non-profit organization that provides a full continuum of high quality medical, emotional and spiritual services to individuals requiring hospice, their family members and the community. The organization serves families in Sussex, Warren and Pike County, PA. For more information on the services they provide, please contact us at 800-888-1117.
NEWTON – International Doula Life Movement (IDLM) founder Anna Adams and Executive Director Pamela Carter visited the Karen Ann Quinlan Hospice administrative office to begin the IDLM – Death/End of Life Doula Specialist Program training. IDLM has partnered with Quinlan Care Concepts – Karen Ann Quinlan Hospice to provide training KAQ Hospice Volunteers and Employees to be End-of-Life Doulas.
Doula, n. (dou; la);
A non-medical professional who provides support to another individual during a time of transition by providing education, information and resources; emotional and holistic care; and physical support.
“The doula movement is rapidly growing and for good reason. In times of transition or crisis, individuals and families need compassionate support to prepare emotionally for change. Well-trained doulas guide people to make the best choice for them,” said Anna Adams, founder of IDLM.
“The International Doula Life Movement offers international doulas — of all specialties — a values and mission-based education, resource center, and community committed to helping them support others,” said Adams.
A death doula is a person who helps support the dying or their loved ones through the end of life with non-medical support.
Left to right: Wood Hungarter, President, Karen Ann Quinlan Hospice, Anna Adams, Founder, International Doula Life Movement, Pamela Carter, Executive Director, IDLM and Lee Ellison, Director of Marketing and Media, Karen Ann Quinlan Hospice.
“We are thrilled to have Karen Ann Quinlan Hospice joining us and look forward to being a part of the Quinlan Care Concepts Team,” said Pamela Carter, IDLM Executive Director.
The trainings, generously funded by the Karen Ann Quinlan Friends of Hospice, started on Friday, May 3. Two trainings, with 10 students each, are planned for 2024 and more trainings will be held in 2025 for volunteers, employees and those in the community who wish to participate in this specialized, 70+ hour certification course. This initiative is part of the strategic plan for Quinlan Care Concepts to offer complete end-of-life services to the community. Upon graduation ILDM certified EOL Doulas will available to help families in the communities that we serve.
Anna Adams and Pamela Carter join students at the first session of IDLM – Death/End of Life Doula Specialist Program.
Published by: National Hospice and Palliative Care Organization
National Healthcare Decisions Day, which is dedicated to inspire, educate and empower the public about the importance of advance care planning, is recognized each year on April 16. The goal is to engage everyone in conversations that encourage people to start to think about their own personal wishes for their health care, particularly at the end of life, and getting people to plan ahead, document those plans, and let loved ones know their wishes.
Advance care planning involves making future healthcare decisions that include more than deciding what care you would or would not want; it starts with expressing preferences, clarifying values, and selecting an agent to express healthcare decisions if you are unable to speak for yourself.
National Healthcare Decisions Day is a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and resources to communicate and document their future healthcare decisions.
In honor of National Healthcare Decisions Day, NHPCO encourages everyone to:
Have A Conversation
Advance care planning starts with talking with your loved ones, your healthcare providers, and even your friends- all are important steps to making your wishes known. These conversations will relieve loved ones and healthcare providers of the need to guess what you would want if you are ever facing a healthcare or medical crisis.
Complete Your Advance Directive
“Advance Directives” are legal documents (Living Will and Healthcare Power of Attorney) that allow you to plan and make your own end-of-life wishes known in the event that you are unable to communicate.
Engage Others in Advance Care Planning
Share brochures, information and advance directives to others in your family, workplace and community. Help others have a conversation about advance care planning.
“National Healthcare Decisions Day exists to inspire, educate and empower the public and providers about the importance of advance care planning.”
On our 44th Anniversary Karen Ann Quinlan Hospice is proud to announce the branding of our four divisions, Karen Ann Quinlan Hospice, Karen Ann Quinlan Home for Hospice, the Joseph T. Quinlan Bereavement Center and Quinlan Palliative Care under the umbrella of Quinlan Care Concepts. Each division name remains the same. Quinlan Care Concepts more accurately reflects the spectrum of services we offer and our commitment to being end-of-life specialists in the communities that we serve. Our quality, compassion, and commitment to those we serve remains the same. Stay tuned for more updates from your local, not-for-profit, award-winning hospice since 1980!
The winning number for the 2024 Hospice Honors program booklet was 2284. If this number is in your journal please call Jennifer Smith at 973-383-0115 ext. 106.
NEWTON — There’s an important medical term that you may not have heard of: Palliative Care (pronounced PAH-LEE-UH-TIVE). “Palliate” means to make comfortable by treating a person’s symptoms resulting from a serious illness. Hospice is just one form of palliative care that many Americans have heard of.
Both hospice and palliative care focus on helping a person be comfortable by addressing issues causing physical or emotional pain, or suffering. Hospice and other palliative care providers have teams of people working together to provide care. The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment.
For more than forty years, Karen Ann Quinlan Hospice has been caring for people at the end of life while hospice nationwide has served more than 1.5 million patients and their family caregivers each year.
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months not years. Palliative care may be given at any time during a person’s illness, from diagnosis on and is appropriate for any stage of a serious illness.
If you or a family member would like to learn more about Quinlan Palliative Care, please call 973-888-9100 a FREE consultation. You may also visit our website at https://www.quinlanpalliativecare.org.
Click here for a printable fact sheet. Click here for a Spanish printable fact sheet.
Karen Ann Quinlan Hospice can help you understand more about palliative care and hospice and determine what might be best for you or your loved one. Contact them at 800-882-1117 or visit their website www.karenannquinlanhospice.org.
Karen Ann Quinlan Memorial Foundation is passionately dedicated to providing hospice care for the terminally ill, bereavement for those who have lost loved ones palliative care for those seeking an extra layer of care while seeking curative treatment.
Serving North and Northwest NJ and the Pike County area PA; please call 800-882-1117 to reach any of our services. For programs, events, and more information visit www.karenannquinlanhospice.org.
The many tasks of caregiving can be so overwhelming that you just start doing things, maybe before you have really taken in what actually needs to be done. It is important to take the time to listen—to the person you are caring for, to the other people caring for them, and to yourself.
Listening to the Patient You may be caring for someone who needs assistance with day-to-day chores and tasks but can still make their own decisions about personal matters such as medical care, financial and household issues. Take some time to listen and explore what kind of help they want. Often what we think someone wants or ought to want is not what they want at all. Sometimes people resist asking for help, even when it is clear they would benefit from assistance. If that is the case, start small and know that over time things will change as they learn to talk with their inner circle and realize what they want help with.
Knowing and understanding what someone wants will be important if you become responsible for making decisions for them. Read up on advance directives which will help you talk about medical decisions and fill out the documents. Not every situation can be anticipated so it is helpful to understand in general what is important to the patient—what they see as quality of life.
Listening to the doctors and other healthcare workers You can offer to go to appointments with the patient and assist by taking notes and keeping track of papers, reports and prescriptions as you and the patient talk to the doctor. Take along the list of questions you generated together. Check with the patient during the appointment to be sure they are getting the information they want and need. Repeat back to the doctor any instructions to be sure they have been understood correctly.
Listen to yourself and reach out for information and support Caregiving can be quite rewarding, and it can be quite challenging. Try not to have rigid expectations of how it will go or how you will feel. Showing up is good; perfection is the enemy. There are resources available to caregivers through government sponsored websites like MyHealthfinder as well as private organizations such as AARP and Caregiver Action Network.
Seek support groups of people caring for like patients; there are many online and in person. The National Institute of Aging, the CDC, the National Alliance on Caregiving, and AARP all are rich resources for help and connections. The American Cancer Society, the American Heart Association, and the Alzheimer’s Association as well as many other disease specific associations all have good information for caregivers.
Karen Ann Quinlan Hospice Reminds the Community that “#SoonerIsBetter!”
