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. 



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