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. 

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.

In Recognition of World Hospice & Palliative Care Day


Hospice and Palliative Care: Making a Difference

A hospice nurse was once asked, “How can you work in hospice – it must be so sad!”

She answered, “I love providing highly-skilled, compassionate care because I know I make a huge difference in the quality of a person’s life. I love that I can use my training as a nurse to bring comfort and dignity to my patients, and seeing the relief on their faces and on the faces of those who care for them. I love that I can offer practical solutions to patients and families and help them find more meaningful moments at the end of life.”

Hospice isn’t about dying it is about living as fully as possible despite a life-limiting illness.

What is Hospice Care?

Hospice care provides pain management, symptom control, psychosocial support, and spiritual care to patients and their families when a cure is not possible. The nation’s hospices serve more than 1.5 million people every year – and their family caregivers, too.

Hospice care is covered by Medicare, Medicaid, and most private insurance plans and HMOs.

Many people only consider hospice care in the final days of life, but hospice is ideally suited to care for patients and family caregivers for the final months of life.

What is Palliative Care?

Palliative care brings the same interdisciplinary team care as hospice to people earlier in the course of a serious illness and can be provided along with other treatments they may still be receiving from their doctor.

Hospices are the largest providers of palliative care services and can help answer questions about what might be most appropriate for a person.

Both hospice and palliative care combine the highest level of quality medical care with the emotional and spiritual support for patients of all ages, with any serious or life-limiting illness, and their caregivers.

Hospice and palliative care can make a profound difference and help maximize the quality of life for all those they care for. To learn more about hospice and palliative care, contact Karen Ann Quinlan Hospice 973-383-0115

Portable Medical Orders (POLSTs) vs Advance Directives

The NHPCO explains the differences between POLSTs and Advance Directives

A POLST is a part of the advance care planning process and communicates your wishes as medical orders. A POLST form consists of a set of medical orders that applies to a limited population of patients, such as seriously ill or frail persons, and addresses a limited number of critical medical decisions. A POLST has the option of specifying Do Not Resuscitate (DNR) but also makes provision for other types of treatment such as feeding tubes and mechanical ventilation. They will be filled out in consultation with your doctor.

What is a POLST?

A POLST communicates your wishes as medical orders, and so is prepared together with your doctor who will sign it. POLST’s have different names in different states, but all have the force of medical orders. POLST’s are specifically for the seriously ill or frail. POLST’s can travel with you and are honored by emergency medical technicians.

How is a POLST different from an advance directive or DNR (do not resuscitate)?

  • POLST = Portable Medical Orders.  Different states use different names such as POLST, POST, MOLST, MOST, etc. for their programs.
  • POLST is for people who are seriously ill or have advanced frailty. If you are healthy, an advance directive is for you. POLST forms and advance directives are both parts of advance care planning but they are not the same.
  • POLST forms must be filled out and signed by a health care provider. When you need a prescription, you go to your provider who writes or types an order for your prescription and signs it. POLST is a medical order so it is the same: you need to go to your health care provider who will write out the POLST and sign it. The difference with POLST is that you should have a good talk with your provider about what you want considering your current medical condition: What is likely to happen in the future? Treatment options? You’ll also be asked to sign your POLST form.
  • POLST forms tell other providers what you want. During a medical emergency, if you can talk, providers will ask you what you want. POLST forms are used only when you cannot communicate and you need medical care. When that is the situation, the POLST form orders providers to give you the treatments you chose.
  • POLST forms are out-of-hospital medical orders. This means that they are medical orders that travel with you. Wherever you are, your POLST form tells health care providers what treatments you want and your goals of care, even if you transfer from hospital to nursing home, back to your home, or to hospice or another setting.
  • POLST is voluntary. You make the choice about having a POLST form: you should never be forced to have one! If you are healthy, however, your provider may choose not sign a POLST form for you since it was designed for people who are seriously ill or have advanced frailty (some state laws do not allow providers to sign a POLST form unless you are seriously ill or have advanced frailty).
  • Advance Directives:  POLST’s give specific directions about treatments during an emergency if you cannot speak for yourself. However, POLSTs do not appoint someone to speak on your behalf which Advance Directives generally do. In a POLST, you specify exactly what you want and don’t want and for how long. They have the force of medical orders and must be honored by emergency medical technicians (EMT’s). EMT’s cannot honor advance directives or medical powers of attorney. Once emergency personnel have been called, they must do what is necessary to stabilize a person for transfer to a hospital, both from accident sites and from a home or other facility. After a physician fully evaluates the person’s condition and determines the underlying conditions, advance directives can be implemented.
  • Do Not Resuscitate (DNR’s):  A do-not-resuscitate order, or DNR order, is a medical order written by a doctor. It instructs healthcare providers not to do cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. If presented, it will be honored by EMT’s. A POLST has the option of specifying DNR but also makes provision for your choices around resuscitation and other types of treatment such as feeding tubes and mechanical ventilation.

How do you find the POLST for your state?

You may want to review your state’s form before you meet with your doctor. The National POLST website has lots of information on POLSTs in general and you will be able to find and review the one from your state. 

How Is Hospice Care Paid For?

The NHPCO answers some FAQs about how Hospice Care is paid for:

How is Hospice Care Paid For?

Hospice is most often paid for as a defined benefit of Medicare. However, hospice may also be paid for as part of a Medicare Advantage plan, by state Medicaid plans, or, in the case of children and others covered by private insurance, by private insurance. There may be different services covered by different sources of payment, so be sure to discuss the source of payment and the services that are covered with your hospice team.

Medicare and Medicaid

Medicare covers hospice care costs through the Medicare Hospice Benefit, which you can read about at Medicare.gov. If you’re in a Medicare Advantage Plan or other Medicare health plan, once your hospice benefit starts, Original Medicare will cover everything you need related to your terminal illness. Original Medicare will cover these services even if you choose to remain in a Medicare Advantage Plan or other Medicare health plan.

Veterans’ Administration (VA) benefits also cover hospice care.

The coverage of hospice care by Medicaid is optional and varies by state so be sure to read up at Medicaid.gov.

Private insurance

Many work-based and private insurance plans provide at least some coverage for hospice care. It’s best to check with your insurance company because there are different types of plans available that may or may not cover hospice services. There are also different ways a person can be considered eligible for hospice care and what costs are covered can vary based on the health plan you have.

Uninsured

For people who are not insured, or who may not have full coverage for hospice services, some hospice organizations may offer care at no cost or at a reduced rate based on your ability to pay. They can often do this because of donations, grants, or other sources. Nearly all hospices have financial support staff who can help you with this, answer your questions, and help you get the care you need.


The Value Of Hospice

News from the National Hospice and Palliative Care Organization:

Research Shows Hospice Produces Better Outcomes, Lower Medicare Costs

(Washington, D.C. and Alexandria, VA) – On Thursday, July 27, 2023, a panel of healthcare experts presented groundbreaking new research at a Capitol Hill briefing for Congressional offices, showing that patient use of hospice contributed to $3.5 billion in Medicare savings in 2019, while also providing multiple benefits to patients, families, and caregivers.

The study, conducted by NORC at the University of Chicago, is one of the most comprehensive analyses of enrollment and administrative claims data for Medicare patients covered by Medicare Advantage and Traditional Medicare. The study was funded by the National Association for Home Care & Hospice (NAHC) and the National Hospice and Palliative Care Organization (NHPCO).

Panelists Dianne Munevar, VP of Health Care Strategy at NORC; Dr. Joseph Shega, Chief Medical Office at Vitas; and Susan Lloyd, CEO of Delaware Hospice, related their vast experience with hospice care, extolling its benefit for patients and their loved ones, and also shared findings which prove that longer hospice stays equate to greater savings for taxpayers and overall, better experiences for patients.

Susan Lloyd, CEO of Delaware Hospice shared her personal experience with her mother’s end of life care. “The full benefits of hospice care are realized when the patient and family have the opportunity to engage with the team who provides the support needed wherever [the patient] calls home. Hospice is not a place, it’s a way of caring for people and their loved ones as they are nearing the end of life,” said Lloyd. “One of the greatest blessings of my life was to be there when my mom died. She was not alone; she was surrounded by love. Hospice made that happen for mom, for me, and my family.”

“There’s a lot of myths and misperceptions about what hospice is and what hospice does because of short stays,” said Dr. Joseph Shega, Chief Medical Officer of VITAS. “So when you have a short stay, the hospice does incredible work to try to meet [patients] where they are to honor their wishes […] but if somebody would have that conversation four, five, six, months earlier, they could have an experience like what Jimmy Carter is experiencing now, where he’s chosen he wants to be at home and there’s no difference in life expectancy between those who enroll in hospice earlier vs. those who don’t. With hospice, you can provide that care at home.”

Key findings from the Value of Hospice study include the following:

  • NORC estimates that Medicare spending for those who received hospice care was $3.5 billion less than it would have been had they not received hospice care.
  • In the last year of life, the total costs of care to Medicare for beneficiaries who used hospice was 3.1 percent lower than for beneficiaries who did not use hospice.
  • Hospice is associated with lower Medicare end-of-life expenditures when hospice lengths of stay are 11 days or longer. In other words, earlier enrollment in hospice reduces Medicare spending even further.
  • Hospice stays of six months or more result savings for Medicare. For those who spent at least six months in hospice in the last year of their lives, spending was on average 11 percent lower than the adjusted spending of beneficiaries who did not use hospice.
  • At any length of stay, hospice care 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.

NHPCO Debunks Hospice Myths

The choice for end-of-life care is deeply personal and should be made by patients, in consultation with loved ones and medical personnel, with a thorough understanding of the prognosis, the various care options available, and the implications of each of those options.

In a recent article published by The National Hospice and Palliative Care Organization, the organization sought to clear up some myths surrounding hospice care. Here’s one of them…

Myth: After entering end-of-life care, “patients don’t typically live long.”

Reality: The median length of stay in hospice care is 17 days and the average lifetime length of stay is 92.1 days, according to the Medicare Payment Advisory Commission.

By sharing information about his personal end-of-life journey, former President Carter has helped Americans understand this reality. President Carter entered hospice care in February 2023 and as of today has been on hospice for more than four months.

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. Some patients can and do outlive their prognosis, and in those cases the patient can be recertified for continued hospice care.

Study after study after study 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.

The 6-Month Requirement… What Does It Mean?

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 at all. People often don’t begin hospice care soon enough to take full advantage of the help it offers.

In the United States, people enrolled in Medicare can receive hospice care if their doctor thinks they have fewer than six months to live should their disease take its usual course. Doctors have a hard time predicting how long a person will live. Health often declines slowly, and some people might need a lot of help with daily living for more than six months before they die.

Talk with your doctor if you think a hospice program might be helpful. If they agree, but think it is too soon for Medicare to cover the services, then you can investigate other ways of paying for the services.

What happens if someone under hospice care lives longer than six months?

Hospice care can be initiated and continued so long as your doctor believes you likely have fewer than six months to live.

Sometimes, people receiving hospice care live longer than six months and the care can be extended. You can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods.

It is also 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.

Palliative Care VS Hospice Care

What are the differences between each type of care?

The Focus:

Palliative: Palliative care is not hospice care: it does not replace the patient’s primary treatment; palliative care works together with the primary treatment being received. It focuses on the pain, symptoms and stress of serious illness most often as an adjunct to curative care modalities. It is not time limited, allowing individuals who are ‘upstream’ of a 6-month or less terminal prognosis to receive services aligned with palliative care principles. Additionally, individuals who qualify for hospice service, and who are not emotionally ready to elect hospice care could benefit from palliative services.

Hospice: Hospice care focuses on the pain, symptoms, and stress of serious illness during the terminal phase. The terminal phase is defined by Medicare as an individual with a life expectancy of 6-months or less if the disease runs its natural course. This care is provided by an interdisciplinary team who provides care encompassing the individual patient and their family’s holistic needs.

Who Can Receive Each Type Of Care?

Palliative: Any individual with a serious illness, regardless of life expectancy or prognosis, can receive palliative care.

Hospice: Any individual with a serious illness measured in months not years can receive hospice care. Hospice enrollment requires the individual has a terminal prognosis.

Can The Patient Still Received Curative Treatments?

Palliative: Yes, individuals receiving palliative care are often still pursuing curative treatment modalities. Palliative care is not limited to the hospice benefit. However, there may be limitations based on their insurance provider.

Hospice: The goal of hospice is to provide comfort through pain and symptom management, psychosocial and spiritual support because curative treatment modalities are no longer beneficial. Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Other factors to consider and discuss, based on individual patient situations, are treatment modalities that no longer provide benefit due to a loss of efficacy.

How Long Can An Individual Receive Services?

Palliative: Palliative care is not time-limited. How long an individual can receive care will depend upon their care needs, and the coverage they have through Medicare, Medicaid, or private insurance. Most individuals receive palliative care on an intermittent basis that increased over time as their disease progresses.

Hospice: As long as the individual patient meets Medicare, Medicaid, or their private insurer’s criteria for hospice care. Again, this is measured in months, not years.

What are the parts of Medicare?

Medicare is the federal health insurance program for:

-People who are 65 or older

-Certain younger people with disabilities

-People with End-Stage Renal Disease

The different parts of Medicare help cover specific services.

Medicare Part A (Hospital Insurance): Part A covers inpatient hospital stays, care in a skilled nursing facility, hospice care, and some health.

Medicare Part B (Medical Insurance): Part B covers certain doctors’ services, outpatient care, medical supplies, and preventative services.

Medicare Part D (Prescription Drug Coverage): Helps cover the cost of prescription drugs (including many recommended shots or vaccines).

With Medicare, you have options on how you get coverage. There are two main ways:

Original Medicare: Original Medicare pays for much, but not all, of the cost for covered healthcare services and supplies.

Medicare Advantage: Medicare Advantage is an “all in one” alternative to Original Medicare. These “bundled” plans include Part A, Part B, and usually Part D.

It’s important to get to know more about Medicare options before you decide how to receive your coverage. More detailed information on Medicare can be found at Medicare.gov

Karen Ann Quinlan Hospice – High Tea for Hospice 2023 Photo Gallery