End-of-Life Caregiving

Are you a caregiver? You may not consider yourself a caregiver, but…..

Do you regularly:

• Drive a family member, friend or neighbor to doctor’s appointments?
• Make meals for someone?
• Help someone with household chores such as cleaning, grocery shopping, lawn care, etc?
• Make regular phone calls to someone to “check in” on them?
• Provide hands-on care, including bathing, help eating, toileting, or other help?
• Help someone make medical decisions?
• Assist someone with personal business affairs, such as bill paying?

If you answered yes to one or more of these questions you
may be a caregiver.

Caregivers provide support to someone who needs help. It doesn’t matter how many hours per week are spent providing support. Caregivers may live with the person they are caring for, providing assistance with daily needs, or may visit the person weekly or call regularly. Being a caregiver involves an investment in time, energy and support.

As a caregiver you may need to provide for all aspects of your loved one’s comfort. People who are near the end-of-life have complex needs so it is important to know various ways to provide support.

Physical Comfort:

It will be very important for you to ask the person you are caring for if they are comfortable. The healthcare providers need to know if they are experiencing physical pain, breathing problems, confusion or other symptoms so that they can work to ease the distress.

Emotional and Spiritual Comfort:

In addition to physical pain, your loved one may experience emotional and spiritual pain. They are experiencing many losses including the loss of control over their own life. It is important for you to continue to explain what is happening with your loved ones care, condition, and other changes.

Care for Yourself:

Caregiving can be a rewarding and exhausting experience. It is important that you manage the stress of being a caregiver by attending to your own needs.

Being Prepared:

Caregiving often comes with new responsibilities and unfamiliar tasks, yet most caregivers never receive training. The following information may help you with a current situation or prepare you for what may happen.

Decision Making:

Has the person you are caring for told you their wishes for end-of-life care? In the event that you are asked to make or help make decisions it is important for you to talk about issues, including thoughts about potential life-prolonging treatments. Advance directives are tools that enable people to write down their preferences on a legal form and appoint someone to speak for them if they are no longer able. A living will, health care power of attorney, financial power of attorney, and plan for after care (funeral arrangements) can help ensure peace of mind for the ill person as well as the caregiver.

End-of-Life Care:

Hospice is end-of-life care that involves a team-oriented approach to quality medical care, pain and symptom management, and emotional and spiritual support tailored to your loved ones needs. Hospice is available to anyone who has a life expectancy of six months or less. Hospice provides medical equipment and medications related to terminal illness. Support is given to you as the caregiver, including counselors to talk to, nurses and aides to teach you how to provide hands-on care, volunteers to help lighten your load and nondenominational chaplains to aide with any spiritual distress.

Community Resources:

In addition to hospice, there may be other community resources that can help you and your loved one. Your Area Agency on Aging, Department of Human Services, and other organizations may offer services to ease your burden. These may include meals on wheels, caregiver training classes, transportation, friendly visitors and respite care so that you can have a break.

Caregiving for someone at the end-of-life can be a challenging, but rewarding experience. Learning about the complex needs of the person you are caring for, and the resources that can help, will be important steps for you to take to prepare you for being a caregiver. Caregiving at the end-of-life may bring about many different feelings – it will be important for you to take care of yourself and ask for help when you need it.

When is the right time for Hospice? – Former President Jimmy Carter receiving hospice care

UPDATED ON: FEBRUARY 20, 2023 / 2:43 AM / CBS/AP

Photo Credit: LBJ Library

Former President Jimmy Carter is receiving hospice care at his home, the Carter Center announced Saturday. He made the decision after a series of short hospital stays, the center said in a statement.

The charity created by the 98-year-old former president said that Carter “decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”

Click here to read the entire article.

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 caregiver.

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.

Six Months or Less to Live

A person of any age is eligible for hospice after being certified by a physician as having a life expectancy that may be six months or less, depending on the course of the disease. If a patient lives beyond six months after admission they can continue to receive services as long as a physician continues to document the patient’s eligibility.

Hospice services are covered by Medicaid and many types of insurance, although many not-for-profit hospices generally provide services regardless of the person’s ability to pay.

Making the Most of the Final Stages of Life

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. Karen Ann Quinlan Hospice, like many hospices around the country, assigns a care team to each hospice patient. The hospice interdisciplinary team may include a physician; nurse; social worker; bereavement counselor; chaplain; and volunteers. Each team member is focused on the person, not the illness, making sure that all physical, emotional and spiritual needs are met.

Pain Management

Hospice has a unique approach to pain management – another advantage of entering hospice care earlier. The care team always works to manage the patient’s pain as expediently and efficiently as possible. 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. 

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Five ways hospice can help

Karen Ann Quinlan Hospice – Let us help.

The vast majority of Americans say what they want at the end of life is to die in their own homes, as comfortable and pain-free as possible. The hospice philosophy is about making sure that a patient’s death experience reflects their wishes. Here are five ways that Karen Ann Quinlan Hospice helps to deliver this.

We give you comfort. The staff at Karen Ann Quinlan Hospice are experts at managing life-limiting illness. Our team ensures that medication, therapies and treatments all support a care plan that is centered on the patient’s goals. And our services can be offered wherever the patient calls home, allowing friends and family to visit freely; something they might not be able to do in a hospital ICU setting.

Hospice gives you peace. Beyond physical relief, Karen Ann Quinlan Hospice strives to help patients and families find emotional and spiritual comfort during what is often a very traumatic time. We are able to provide families with counselors, therapists, spiritual care advisors and bereavement professionals who can best support their struggles with death and grieving. These services are part of the hospice benefit, covered by Medicare, Medicaid or most private insurances

Hospice gives you something extra. Hospice is not only about compassionate medical care and control of pain. Pet therapy and massages are offered in addition to many other programs.

Hospice gives caregivers guidance. Most families are not prepared to face the death of a loved one. In addition to caring for patients, Karen Ann Quinlan Hospice also offers services for families and loved ones that provide emotional support and advice to help family members become confident caregivers and adjust to the future with grief support for up to a year.

Karen Ann Quinlan Hospice gives you more. Be it more joy, more love, or more quality of life in general, the goal of Karen Ann Quinlan Hospice is to offer patients the ability to enjoy the time they have remaining, and create meaningful memories for their families.

Hospice names new Clinical Director

Karen Ann Quinlan Memorial Foundation is pleased to announce that Irena Booth, MPH, BSN, RN has joined our team as Clinical Director.  

Irena has over 25 years of experience in Adult and Pediatric Oncology and Hospice. Most recently, Irena was the Nurse Manager at RWJ Barnabas Health – Newark Beth Israel Medical Center, a 673-bed regional care, teaching hospital that provides comprehensive health care services to local communities throughout the northern New Jersey metropolitan area.  

Prior to her tenure as Nurse Manager, Irena held the positions of Interventional Radiology RN and Assistant Manager in the Oncology Unit at Saint Barnabas Medical Center – RWJ Barnabas Health, New Jersey’s oldest and nonprofit, nonsectarian hospital. 

Additionally, before joining the RWJ Barnabas Health team, Irena held the position of Hospice Team Manager at MJHS a large not-for-profit health system in the Greater New York area. MJHS’s range of health services include home care, hospice and palliative care for adults and children, rehabilitation and nursing care and the research based MJHS Institute for Innovation and Palliative Care. 

Many of Irena’s roles have been in leadership, focusing on a transformational approach and building relationships. Irena has extensive knowledge in clinical operations, regulatory compliance, Hospice, Palliative Care and Acute care. 

In her spare time, Irena is an avid reader and aspiring baker. 

We are so excited to welcome Irena to our team! 

Irena Booth, MPH, BSN, RN
Clinical Director, Karen Ann Quinlan Hospice

What kind of support/services can I expect when placed in hospice care?

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 workers 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.
  • Medical Social Service is provided by a qualified social worker under the director of a physician.
  • 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. There is no cost and calling does not commit you or your loved one to hospice care. Perhaps there are other resources in the community that could be of help to you; our social workers or nursing team will help guide you.

What is Hospice? How can I navigate through the myths surrounding hospice care?

Myths are common in hospice, for both patients and physicians. Breaking through the myths helps ensure each conversation about hospice is accurate and productive. We are always available at Karen Ann Quinlan Hospice to talk to you or a loved one regarding appropriateness for Hospice and how it works.

Myth: Hospice is only appropriate for the last few days of a terminal illness.
Truth: Hospice’s goals are symptom management and quality of life. If a patient’s health status is in continual decline, he or she likely qualifies for hospice care. Sooner is better when it’s time for Hospice. The sooner you make the decision the sooner we here at Karen Ann Quinlan Hospice can help you and your family with our multi-disciplinary team which includes: doctor, nurses, aides, volunteers, chaplains, social workers and bereavement counselors.

Myth: A patient cannot leave hospice.
Truth: Patients don’t always continually decline. Sometimes health will improve. Hospice is based on ongoing evaluation. Patients can come off or go on hospice as needed.

Myth: If on hospice, a patient cannot receive any treatment.
Truth: Hospice is not based on a “no treatment” philosophy, rather a shift in treatment goals. If a patient is on hospice for cardiac problems and then breaks a bone, that injury can be treated without coming off hospice.

Myth: All medications stop and morphine is administered.
Truth: Medications that are necessary to preserve quality of life are continued. A multi-disciplinary team ensures medications are continually evaluated and discussed.

Myth: Patients die sooner on hospice.
Truth: According to the National Hospice and Palliative Care Organization, hospice care patients can live 29 days longer than non-hospice patients, with a better quality of life. To learn more about Hospice and see if it may be appropriate for you or a loved you can view our FREE virtual presentation, “What is Hospice,” by clicking the link: https://bit.ly/3XHWEmC

Children’s Art Bereavement Program Scheduled

Children who participated in the children’s art bereavement program made several crafts as they learned methods to cope with the loss of a loved one.

The effects of unresolved grief on children can be devastating. From a child’s perspective, the experience of loss is not only overwhelming emotionally, but affects cognitive functioning as well.

Young children may be unable to recognize or categorize their losses, let alone sort them one from another. They may receive unclear explanations or no information at all about why these losses have occurred.

Karen Ann Quinlan Hospice and the Joseph T. Quinlan Bereavement Center will host the Children’s Art Bereavement Program on Thursday evenings, 6 p.m. – 8 p.m., starting on March 9. This themed program is designed for children (age 6-12) who have experienced the loss of a loved one through death. This program will focus on meeting the individualized needs of grieving children through art and play.

This series also helps children understand their own unique feelings in grief, allows them to come together with others who have also experienced the loss of a loved one, and provides an environment where they feel comfortable asking questions and expressing their feelings and fears about death.

For the adults, a simultaneous group will be provided for the parents or guardians. This group will be educational and supportive in nature.  

Registration for this session is limited. Pre-registration is required and there is a $150.00 fee to help cover the cost of materials and supplies. Limited scholarships are available. Please call Lorri Opitz, Bereavement Counselor, for more information or to register at 973-948-2283 or email lopitz@karenannquinlanhospice.org.

Half for Hospice Winner Drawn

The 2022 Half for Hospice winner was drawn on Wednesday, December 7, at the administration office of Karen Ann Quinlan Hospice.

The winner, 1462 Ashley V. from Brick Twp., will receive $8,555! Stay tuned for details on the 2023 Half for Hospice Raffle!

Grief Learning Library

At the Joseph T. Quinlan Bereavement Center we have over 500 books on Grief, from working through the grief process with children, to inspirational devotionals on grieving…from anticipatory grief, to how grieving affects our brain chemistry.

Some of the titles that are available to borrow from the Grief Library at the Joseph T. Quinlan Bereavement Center

All of our titles are available for lending through the Grief Learning Library at the Bereavement Center. To borrow a book please visit the Bereavement Center located on 5 Plains Road in Augusta during normal business hours – 8:30 a.m. – 4:30 p.m. and “sign” the books out as you would at the public library.

It’s a wonderful resource for anyone experiencing grief for the first time or reflecting on a past loss. Plus, we have professionals on staff if you feel you may need more help navigating through the grief process. For more information please call 973-948-2283.

Bereavement Center receives Hackettstown Medical Center CAB grant

Atlantic Health System and Hackettstown Medical Center are committed to building healthier communities, beyond simply the delivery of excellent health care in our hospitals, medical practices and facilities. Understanding and supporting the needs of our local communities in Warren County is a top priority for Hackettstown.

Presenting a check for the $5,000 grant from left to right are Eric Cross of Duke’s Landscaping, Dr Barbara Jayne Lewthwaite, Chairperson of the Community Action Board, John Quinlan, Director of Foundation at Karen Ann Quinlan Hospice, and Michele McGrogan, Program Manager and Community Health Care Coordinator.

With that in mind, the Community Advisory Board (CAB) of Hackettstown Medical Center was recently pleased to award Joseph T. Quinlan Bereavement Center with a Hackettstown Medical Center CAB grant for uncompensated Bereavement Care in Warren County.

A list of priority health needs in the Hackettstown Medical Center service area were identified in our most recent Community Needs Assessment which include, but not limited to – heart disease, diabetes & obesity, substance misuse, mental health and cancer.

This grant awarded to Joseph T. Quinlan Bereavement Center has met one or more of the identified priority health needs, and will now help Hackettstown Medical Center and Atlantic Health System address these needs – this is great news for residents of this region!

Pet Memorial Butterfly Release Video


Click on the image to start/view the video.

Joseph T. Quinlan Bereavement Center and Abbey Glen Pet Memorial Park present the Annual Pet Memorial Butterfly Release Ceremony. Due to inclement weather the butterflies were not able to be released at the ceremony. Please join us in watching the release that was held on Wednesday, September 14. Please watch until the end for a scroll of all the names that were commemorated on Sunday, September 11.

Pass It Along Volunteers help at Home for Hospice

Karen Ann Quinlan Hospice would like to thank all the volunteers from Pass It Along for their help and hard work on Saturday, June 11 – “Pass It Along Day.” 

Their efforts really make a difference to our clients and staff at the Karen Ann Quinlan Home for Hospice in Fredon! You all did an excellent job – thank you! #passitalong, #passitalongday