What is a Death Doula?

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

Karen Ann Quinlan Hospice Named as Prestigious 2024 Hospice CAHPS Honors Award Recipient

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.

IDLM partners with Karen Ann Quinlan Hospice to train EOL Doulas

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.

National Healthcare Decisions Day

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.”

Remember….. Your Decisions Matter!

44th Anniversary – Quinlan Care Concepts

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!

What is Palliative Care and how can it help?

Press Release

FOR IMMEDIATE RELEASE:

DATE: March 4, 2023

What is Palliative Care and How Can it Help?

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.

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Taking time to listen as a Caregiver

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.

Ten Things You May Not Know About Hospice Care.

Some people mistakenly think hospice care is just about dying…that hospice is the place you call when there’s nothing more that can be done. Nothing could be further from the truth. 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. According to the NHPCO, in 2021 1.71 million Medicare beneficiaries were enrolled in hospice care for one day or more.

There are some important facts about hospice that people don’t know and this may be stopping people from getting the best care possible, when they need it most:

1. Hospice is not a place; it’s high-quality medical care that helps the patient and family caregivers focus on comfort and quality of life.

2. Hospice is paid for by Medicare, Medicaid, most insurance plans, HMOs, and managed care plans. Fear of costs should never prevent a person from accessing hospice care.

3. Hospice serves anyone with a life-limiting illness, regardless of age or type of illness.

4. Hospice serves people of all backgrounds and traditions; the core values of hospice—allowing the patient to be with family, including spiritual and emotional support, treating pain—cut across all cultures.

5. Research has shown that the majority of Americans would prefer to be at home at the end of life’s journey—hospice makes this possible for most people.

6. Hospice serves patients in hospitals, nursing homes, private facilities, or our Karen Ann Quinlan Home for Hospice; however most hospice care is given in the patient’s own home.

7. Hospice patients and families can receive care for six months or longer.

8. A person may keep his or her referring physician involved while receiving hospice care.

9. Hospice offers grief and bereavement services to family members and the community.

10. To get the most out of what hospice offers, it’s better to have care for more than just a few days.


If this information about hospice surprises you, take the time to find out more. The best time to learn about hospice is BEFORE someone in your family is facing a healthcare crisis. For more information, contact Karen Ann Quinlan Hospice at 800-882-1117. This information is provided by the National Hospice and Palliative Care Organization and Karen Ann Quinlan Hospice. Karen Ann Quinlan Memorial Foundation is passionately dedicated to providing Hospice care for the terminally ill and Bereavement for those who have lost loved ones. 

2023 Lights of Life – Featured Stars

Click here for a complete 2023 Lights of Life Memorial Program Booklet.

Click on the image above to view the 2023 Lights of Life – Featured Stars.

Happy Birthday Shirley!

 

This week Karen Ann Quinlan Hospice had the honor of sharing in the 100th Birthday of Shirley B. Her family celebrated with a banner, old photos, custom chocolate treats, flowers and balloons to help mark her special day. Grandchildren and other family members who couldn’t be with her for the celebration called her on the phone and some even reached out to her over video chat to extend their love and well wishes!

Shirley was born in 1923 in Amber, NY, and grew up in Skaneateles, NY. Shirley met her husband while at nursing school in Syracuse, NY. They were married in 1946 and had 4 children. As newlyweds, they lived in Syracuse, but eventually moved to Sparta, NJ, where they lived for about 50 years. At her birthday celebration Shirley spoke very fondly of Sparta; she loved living there!

Over the years, her family grew to 9 grandchildren and 5 great-grandchildren.

A dedicated healthcare professional, she worked as a Registered Nurse in Andover, NJ, and Newton, NJ, until the age of 89 years old.

Shirley spent the last 50 years as a member of the Lafayette Federated Church. For many years, countless people gathered in her home for Prayer Group and she also met with friends for weekly prayer. Her philosophy was that every day was a gift and her prayer was always that God would use her to be a blessing to all she would encounter throughout her day, as a nurse, mother, friend or stranger.

Happy 100th Birthday Shirley!

November is National Hospice and Palliative Care Month

The NHPCO recognizes National Hospice and Palliative Care Month

November is recognized annually as National Hospice and Palliative Care Month (HAPCM), a time for providers to reach out to their local communities, engage media contacts, and recognize the valuable contributions made by staff and volunteers. 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.

Each year, the National Hospice and Palliative Care Organization (NHPCO), establishes a theme for the month and creates outreach materials for members. The theme for HAPCM 2023 is Courageous Conversations.

In a culture that often teaches us to resist mortality and a healthcare system defined by , the seemingly simple act of having a conversation about dying can have a profound impact. What does death mean in my life? If I am faced with a terminal diagnosis, how would my values shape my end-of-life journey? How do I want my loved ones to engage with me toward the end of my life? It’s difficult to think about these questions but having these courageous conversations with ourselves, family, friends, and doctors can mean the difference between having the type of death a patient wants – one that matches up with their values and desires – and one that doesn’t allow them to have a say in their own end-of-life journey.

Throughout the month, NHPCO is encouraging everyone to have these Courageous Conversations to start a meaningful dialogue on “dying a good death.”

Supporting a friend who is grieving

Often people feel unsure about how to help someone who is grieving after a death or other major loss. What most people need after a loss is comfort and caring from family and friends. Listening, running errands or simply being present are a few examples of how you might support a grieving friend or family member.

When people are grieving (also known as mourning or bereavement), thoughts and emotions are often heightened. The most important thing you can do to show that you care is being present. Offering advice or suggestions about what a person should do or should be feeling is not needed. Instead, try to be comfortable being with the person you care about – lending an ear or holding a hand is a very helpful thing to do.

Acknowledge all feelings. Their grief reactions are natural and necessary. Do not pass judgment on how well they are or are not coping.

Understand and accept cultural and religious perspectives about illness and death that may be different from your own. For example, if a family has decided to not allow their children to attend the funeral because of their beliefs that children should not be exposed to death, support their decision even if this may not be what you would do.

Help the person to renew interest in past activities and hobbies, when they are ready, or to discover new areas of interest. Offer suggestions such as, “Let’s go to the museum on Saturday to see the new exhibit,” but be accepting if your offer is declined.

Be sensitive to holidays and special days. For someone grieving a death, certain days may be more difficult and can magnify the sense of loss. Anniversaries and birthdays can be especially hard. Some people find it helpful to be with family and friends, others may wish to avoid traditions and try something different. Extend an invitation to someone who might otherwise spend time alone during a holiday or special day, but be accepting if your offer is declined.

There is no right way to grieve and mourn. Be very careful not to impose your ideas, beliefs and expectations on someone else, no matter how much you think it might help. It is important to understand that the way a person might respond to a loss is unique to them.

What is the Coping With Loss Support Group and how can it help me?

The death of a loved one can be one of the most challenging, confusing and difficult experiences we encounter throughout our lifetime. The resulting grief and the wide variety of emotional experiences can be debilitating at times and may change often and quickly.

Bereavement care will help you identify strengths, difficulties, stressors, and coping skills that will help you adapt to a significant loss in your life. It can help you understand how you are responding to loss and provide support to help you deal with your grief. Reactions that people experience can be physical, emotional, social, and spiritual in nature. It’s important to remember that no two people will respond to a loss in exactly the same way.

A bereavement professional can assess how you are coping with grief and offer education and support. Most people feel strengthened, encouraged and supported when they learn about grief, understand how it affects them, identify coping strategies, and learn new methods to help themselves through the grief experience.

Karen Ann Quinlan Hospice offers adult peer support groups which can be tremendous resources during emotionally challenging times. They provide an opportunity to share your story with others as well as hear from others who have also experienced the loss of a loved one. Much can be gained from connecting with others who are also walking along this road of grief and to hear about what helped them and what experiences and obstacles along the way were most challenging.

Please call the Joseph T. Quinlan Bereavement Center at 973-948-2283 to speak with a counselor with any questions you may have regarding our support groups.