Film Explores End-of-Life Care

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Free Screening of ‘Being Mortal’ on April 19, 2017

Newton Theatre and Karen Ann Quinlan Hospice are holding a free, community screening of the documentary “Being Mortal” on April 19, 6 p.m. at Newton Theatre on 234 Spring Street in Newton. After the screening, audience members can participate in a guided conversation on how to take concrete steps to identify and communicate wishes about end-of-life goals and preferences.

“Being Mortal” delves into the hopes of patients and families facing terminal illness. The film investigates the practice of caring for the dying and explores the relationships between patients and their doctors. It follows a surgeon, Dr. Atul Gawande, as he shares stories from the people and families he encounters. When Dr. Gawande’s own father gets cancer, his search for answers about how best to care for the dying becomes a personal quest. The film sheds light on how a medical system focused on a cure often leaves out the sensitive conversations that need to happen so a patient’s true wishes can be known and honored at the end.

“Being Mortal” underscores the importance of people planning ahead and talking with family members about end-of-life decisions.

Seventy percent of Americans say they would prefer to die at home, but nearly 70 percent die in hospitals and institutions. Ninety percent of Americans know they should have conversations about end-of-life care, yet only 30 percent have done so.

The free screening is made possible by a grant from The John and Wauna Harman Foundation in partnership with the Hospice Foundation of America.

For more information about the free screening, contact Lee Ellison, Director of Marketing at Karen Ann Quinlan Hospice at 973-383-0115 or lellison@karenannquinlanhospice.org. Attendees can also register on our website at www.KarenAnnQuinlanHospice.org/BeingMortal.

Download Advance Directive Forms

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What are Advance Directives?

Download an advance directive for your state:
New Jersey
Pennsylvania
Other States

Click here for a guide on choosing a health care proxy.

A living will allows you to document your wishes concerning medical treatments at the end of life.

Before your living will can guide medical decision-making two physicians must certify:

You are unable to make medical decisions,
You are in the medical condition specified in the state’s living will law (such as “terminal illness” or “permanent unconsciousness”),
Other requirements also may apply, depending upon the state.
A medical power of attorney (or healthcare proxy) allows you to appoint a person you trust as your healthcare agent (or surrogate decision maker), who is authorized to make medical decisions on your behalf.

Before a medical power of attorney goes into effect a person’s physician must conclude that they are unable to make their own medical decisions. In addition:

If a person regains the ability to make decisions, the agent cannot continue to act on the person’s behalf.
Many states have additional requirements that apply only to decisions about life-sustaining medical treatments.
For example, before your agent can refuse a life-sustaining treatment on your behalf, a second physician may have to confirm your doctor’s assessment that you are incapable of making treatment decisions.
What Else Do I Need to Know?

Advance directives are legally valid throughout the United States. While you do not need a lawyer to fill out an advance directive, your advance directive becomes legally valid as soon as you sign them in front of the required witnesses. The laws governing advance directives vary from state to state, so it is important to complete and sign advance directives that comply with your state’s law. Also, advance directives can have different titles in different states.
Emergency medical technicians cannot honor living wills 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.
One state’s advance directive does not always work in another state. Some states do honor advance directives from another state; others will honor out-of-state advance directives as long as they are similar to the state’s own law; and some states do not have an answer to this question. The best solution is if you spend a significant amount of time in more than one state, you should complete the advance directives for all the states you spend a significant amount of time in.
Advance directives do not expire. An advance directive remains in effect until you change it. If you complete a new advance directive, it invalidates the previous one.
You should review your advance directives periodically to ensure that they still reflect your wishes. If you want to change anything in an advance directive once you have completed it, you should complete a whole new document.

Understanding Hospice Care

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What is hospice care? Hospice focuses on caring, not curing and in most cases care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness. Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.

 

Sorting out hospice care myths

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In the living room, a grandfather laughs and plays video games with his granddaughters. Later, he joins the rest of his family to say grace before enjoying a meal together. Moments like these may seem ordinary to most. Would it surprise you to know that this grandfather, Robert, is dying and on hospice care?

Many people think that being on hospice means lying in a bed, barely conscious. Robert is a patient who proves that is not case. Many of his final moments were anything but ordinary, and they would not have been possible without the help of hospice.

Robert’s experience is not unique. The mission of Karen Ann Quinlan Hospice is to provide specialized care for end-of-life patients and their families. More simply, hospice care supports living one’s life to the fullest with dignity regardless of how much time remains.

When Robert was diagnosed with cancer, he “wondered if there was any chance of getting my quality of life back while I was still alive.” His answer, “I knew at that moment it was time to call hospice.”

Here are some of the common myths of hospice that need to be put to rest:

MYTH: Hospice care means leaving home.
FACT: Hospice services can be provided in a patient’s own home, a nursing home, long-term care facility or a hospice care center.
Hospice is not a place. In fact, hospice services can be provided to a terminally ill patient and his or her family wherever they are most comfortable, or wherever they consider “home.” Robert’s wish was to make sure he was able to stay home at the end of his life. Hospice made it possible for Robert’s son, Eric, and his family to move into Robert’s home and enjoy dinner together four to five times each week.

MYTH: Hospice means forgoing all medical treatment.
FACT: Hospice nurses and physicians are experts in the latest medications and devices for pain and symptom relief.
In every case, a hospice provider will assess the needs of the patient, deciding which medications and equipment are needed for maximum comfort. For example, Robert’s medical staff provided sleep medication to help him through the night. “I am speaking from the heart when I say hospice provides not only superb medical care, but also offers compassion that I would not have gotten anywhere else,” Robert said.

MYTH: Hospice means strangers care for you.
FACT: Hospice provides a dedicated team of specialists to suit the needs of each patient and educate family members to serve as caregivers.
Hospice organizations strive to educate family members to serve as the primary caregivers for an end-of- life patient. In addition, “The doctors, nurses, aides, social workers, therapists and chaplains who make up my hospice team are there whenever I need them,” Robert said, “All I have to do is pick up the phone and someone from hospice is there to help.”

MYTH: Hospice care ends when someone dies.
FACT: Hospice organizations offer bereavement services for all ages.
Hospice counseling services that deal specifically with grief and coping after the loss of a loved one are available at no cost for up to a year after someone dies. Robert’s son, Eric, credits hospice as something that he and his family can always look back and reflect on in a positive way.

MYTH: People on hospice are in bed, waiting to die.
FACT: Hospice enables special moments and memories at the end of a life that would otherwise not happen.

Robert called hospice because he wanted to live happily and with dignity, restoring a quality of life that he would have otherwise lost to invasive treatments and surgeries. In a final letter chronicling his hospice experience, Robert wrote, “If I inspire others to call hospice, I know I’ve made a difference.”

To learn more about how hospice can help you and your family please call Karen Ann Quinlan Hospice at 973-383-0115.

Julia’s 90th Birthday Celebration – Photo Gallery

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Julia Quinlan, co-founder and President of Karen Ann Quinlan Hospice recently celebrated her 90th birthday at the Annual High Tea for Hospice on February 23, 2017. The event, hosted by Friends of Hospice was held at the Lake Mohawk Country Club. We would like to thank all who attended for making the day extra special for Julia.

Annual High Tea for Hospice
Annual High Tea for Hospice
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Sussex Bank Foundation Donates to Capital Campaign

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The Sussex Bank Foundation recently donated $6,000 to Karen Ann Quinlan Hospice. The donation with be used for the Joseph T. Quinlan Bereavement Center Capital Campaign. 

A portion of the donation was raised during the 2016 Sussex Bank Foundation Inc. Golf Outing. The event was held on May 23 at Crystal Springs, Wild Turkey. The mission of the SB Foundation, Inc., is to support the local charities in the communities they serve in order to make a positive impact and help them be an agent for good. 

This year’s outing will be held on Monday, May 17, at the Montclair Golf Club. More information about this year’s outing can be found at https://www.sussexbank.com/events/golf-outing/

SB Foundation, Inc., recently donated $6,000 to the Joseph T. Quinlan Bereavement Center Capital Campaign. Left to right: John Quinlan, Director of Foundation at Karen Ann Quinlan Hospice; Keri Marino of Sussex Bank and member of the Karen Ann Quinlan Charitable Foundation; Julia Quinlan, Co-founder of Karen Ann Quinlan Hospice; Cecelia Clayton, Executive Director at Karen Ann Quinlan Hospice and Dawn Machacek, Marketing Director at Sussex Bank.

We would like to thank the SB Foundation Inc., for their generous donation and continued support and partnership.

Myths of Hospice Care

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In the living room, a grandfather laughs and plays video games with his granddaughters. Later, he joins the rest of his family to say grace before enjoying a meal together. Moments like these may seem ordinary to most. Would it surprise you to know that this grandfather, Robert from Buffalo, NY, is dying and on hospice care?

Many people think that being on hospice means lying in a bed, barely conscious. Robert is a patient who proves that is not case. Many of his final moments were anything but ordinary, and they would not have been possible without the help of hospice.

Robert’s experience is not unique. The mission of hospice is to provide specialized care for end-of-life patients and their families. More simply, hospice care supports living one’s life to the fullest with dignity regardless of how much time remains.

When Robert was diagnosed with cancer, he “wondered if there was any chance of getting my quality of life back while I was still alive.” His answer, “I knew at that moment it was time to call hospice.”

Here are some of the common myths of hospice that need to be put to rest:

MYTH: Hospice care means leaving home.

FACT: Hospice services can be provided in a patient’s own home, a home for hospice, a nursing home, long-term care facility or a hospice care center. Hospice is not a place. In fact, hospice services can be provided to a terminally ill patient and his or her family wherever they are most comfortable, or wherever they consider “home.” Robert’s wish was to make sure he was able to stay home at the end of his life. Hospice made it possible for Robert’s son, Eric, and his family to move into Robert’s home and enjoy dinner together four to five times each week.

MYTH: Hospice means forgoing all medical treatment.

FACT: Hospice nurses and physicians are experts in the latest medications and devices for pain and symptom relief. In every case, a hospice provider will assess the needs of the patient, deciding which medications and equipment are needed for maximum comfort. For example, Robert’s medical staff provided sleep medication to help him through the night. “I am speaking from the heart when I say hospice provides not only superb medical care, but also offers compassion that I would not have gotten anywhere else,” Robert said.

MYTH: Hospice means strangers care for you.

FACT: Hospice provides a dedicated team of specialists to suit the needs of each patient and educate family members to serve as caregivers. Hospice organizations strive to educate family members to serve as the primary caregivers for an end-of- life patient. In addition, “The doctors, nurses, aides, social workers, therapists and chaplains who make up my hospice team are there whenever I need them,” Robert said, “All I have to do is pick up the phone and someone from hospice is there to help.”

MYTH: Hospice care ends when someone dies.

FACT: Hospice organizations offer bereavement services for all ages. Hospice counseling services that deal specifically with grief and coping after the loss of a loved one are available at no cost for up to a year after someone dies. Robert’s son, Eric, credits hospice as something that he and his family can always look back and reflect on in a positive way. “As difficult as it was, it was really special to all be together. My wife and I talk about it all the time now,” Eric said.

MYTH: People on hospice are in bed, waiting to die.

FACT: Hospice enables special moments and memories at the end of a life that would otherwise not happen. Robert called hospice because he wanted to live happily and with dignity, restoring a quality of life that he would have otherwise lost to invasive treatments and surgeries. In a final letter chronicling his hospice experience, Robert wrote, “If I inspire others to call hospice, I know I’ve made a difference.”

BIGGS Kids donates to Capital Campaign

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Steve Bieganousky, founder of BIGGS Kids presents a check for $10,000 to members of the Joseph T. Quinlan Bereavement Center capital campaign. From left: Diana Sebzda, Director of Bereavement, Steven Bieganousky, Julia Quinlan, Co-founder Karen Ann Quinlan Hospice and Robin Tomlinson, V.P. Branch Sales Manager at Sussex Bank.

 

Steve Bieganousky, founder of the Steven P. Bieganousky Foundation for Children, Inc., presented a check for $10,000 to Joseph T. Quinlan Bereavement Capital Campaign committee members. The donation will benefit the Family Therapy/Children’s Art Room at the new, permanent home of the Bereavement Center on 5 Plains Road in Augusta. The Bereavement Center, currently located on 61 Spring Street in Newton, expects to take residence in the new center in early April.

Steven P. Bieganousky was a 21 year-old Sparta resident who died suddenly in a car accident on March 27, 2005. His father Steve Bieganousky wants to make sure his son’s devotion to children lives on.

“It was heart warming to know that Steven had positively touched people’s lives of
all ages.” -Steven Bieganousky

The Bieganousky family founded The Steven P. Bieganousky Foundation for Children, Inc., an organization (also known as BIGGS Kids) dedicated to raising funds to benefit area youngsters.

Money raised through the foundation will be distributed to local agencies providing educational, recreational and health programs for children in Sussex County.

Although The Bieganousky’s know nothing will ever make things the way they were when Steven was here, they believe the new foundation is a fitting tribute and the perfect legacy for a son taken too soon.

“I was so proud – it was what kept me going – he is my hero.” -Steven Bieganousky

BIGGS Kids MISSION:

  • Raise awareness for the needs of children at risk.
  • Be a source of financial support to qualified local organizations that provide opportunities to make a positive difference in a child’s life.
  • Maintain a high level of integrity throughout the fundraising process and disbursement of funds.
  • Attain these goals as Steven would in a loving, caring way, not being afraid to speak on behalf of a child’s defense.

For those wanting to learn more about the Joseph T. Quinlan Bereavement Center’s capital campaign or BIGGS Kids please call 973-383-0115. The Joseph T. Quinlan Bereavement Center provides grief support and counseling for hospice families and the community free of charge. The staff works to bring comfort and understanding to help families through difficult times. Individual counseling and ongoing support groups are offered. Support groups include: anticipatory grief support, school bereavement support, memorial services, grief lecture series, children’s bereavement art program and pet loss support.

 

Bump named Hospice Chaplain

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Karen Ann Quinlan Hospice is pleased to announce the appointment of Dawn Bump to the position of Chaplain. Bump has been with Karen Ann Quinlan Hospice for four years beginning her relationship as a volunteer in the Sussex County area. 

“Presently, I am working towards becoming a Board Certified Chaplain, which at some point will be the standard.”

Upon graduating and ordination in 2015, Bump became a Chaplain Intern while working through her Clinical Pastoral Education. Bump’s Interfaith background has been pivotal to her chaplaincy. She is devoted to working with the terminally ill and their families. Bump’s primary area of service will be to the residents of Pike County and surrounding areas.

Chaplain Bump can be reached by calling 570-296-3591. She is based in the Milford, Karen Ann Quinlan Hospice office located on 104 Bennett Avenue, Suite 2A-2 in Milford, PA. If you know a family that is struggling to come to terms with a terminal diagnosis, please reach out to us to discuss the options.

Paying for End-of-Life Care

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How to pay for the rising costs of health care? Concerns over these costs are shared not only by elected officials but by almost every family across the country. Many baby boomers are providing care for their aging parents just as they are facing their own health care issues.

Yet, for almost 30 years, the Medicare Hospice Benefit has provided a model for financing end-of-life care that can bring great relief and support to families during one of life’s most difficult times.

This benefit covers virtually all aspects of hospice care with little out-of-pocket expense to the patient or family. As a result, the financial burdens often associated with caring for a terminally-ill patient are lifted.

Hospice care also offers supports to the loved ones of the patient; this brings an added level of relief to the dying person, knowing their loved ones are being cared for as well.

Hospice is paid for through the Medicare Hospice Benefit, Medicaid Hospice Benefit, and most private insurers. In addition, most private health plans and Medicaid in 47 States and the District of Columbia cover hospice services. If a person does not have coverage through Medicare, Medicaid or a private insurance company, hospices will work with the person and their family to ensure needed services can be provided.

Medicare covers these hospice services and pays nearly all of their costs:

  • Doctor services
  • Nursing care
  • Medical equipment (like wheelchairs or walkers)
  • Medical supplies (like bandages and catheters)
  • Drugs for symptom control and pain relief
  • Short-term care in the hospital, including respite and inpatient for pain and symptom management
  • Home health aide and homemaker services
  • Physical and occupational therapy
  • Speech therapy
  • Social work services
  • Dietary counseling
  • Grief support

Medicare will still pay for covered benefits for any health problems that aren’t related to a terminal illness.

Hospice and palliative care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Families making end-of-life decisions for a loved one need compassion and support, not financial worries. The Medicare Hospice Benefit helps alleviate these concerns.

How to Choose Hospice Care

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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 will find hospice workers in assisted living centers, nursing homes, hospitals and residential facilities. Some patients may even receive care in their own homes or the homes of friends and 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.

And while all hospice centers are regulated by the government, each facility has meaningful differences in personnel, policies and facilities.

LOCATION

Hospice specializes in making the patient feel as comfortable as possible. Care can take place anywhere. Patients can even receive treatment in their own homes, where they are most comfortable.

Some diseases may require more specialized care than others. The patient can also choose to stay in a facility that can give them easy, 24-hour access to nurses, medication, and medical equipment needed for their comfort.

It is always best to consult with a doctor regarding this decision. The hospice staff will meet with the patient’s physician to talk about the current symptoms, medical history and life expectancy. Then they will let you know which options are available to you.

COMMUNICATION

Pick a hospice service that helps you feel at ease. You are going to have to ask and answer some extremely difficult questions. Death is a tough subject to discuss. Clear, caring communication is absolutely essential.

A quality hospice program will give you all the time and personal attention you need to ease your mind.

Part of picking hospice involves having the right feeling. If the hospice staff is personable and makes you feel comfortable, that’s a good sign.

REFERRALS

Every patient who receives hospice treatment must be qualified by a physician. Usually, this means there is a life expectancy of six months or less.

Since some physicians may hesitate to broach the subject of hospice care, you may need to bring it up yourself. Ask whether hospice care would be appropriate and which services might be most helpful to ease the end-of-life process.

You can also approach a hospice facility directly to ask about their services. They will help you determine which care is most appropriate.

Hospice care has been growing since the 1990s. Many people are realizing that it is possible to die with peace and dignity. Hospice can help the end-of-life experience a little easier for the patient and loved ones.

When is it time for hospice?

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“When is the right time?” 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. 

When is the right time to have that “difficult” conversation

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We Procrastinate.  We’re not proud of it, be we all do it.  It’s no secret that many of us “hit the ground running” each day; come up for air on weekends and marvel, perplexed and vexed, at the passage of time.  No wonder talking “face to face” has been put on hold.  Multi-tasking and technological advances, such as voicemail, email, facebook, tweeting and text-messaging, have nearly rendered dialogue as an archaic art form.

 

And yet, we know there are really important circumstances that warrant more than a perfunctory “fly by” chat with our spouse, child, colleague or friend.  Serious illness is one of the critical issues requiring a deliberate and sensitive discussion with our loved ones.  The value of having a true “heart to heart” talk with our family regarding our health, health care wishes and future health care cannot be underestimated.

 

A recent survey, conducted by the Conversation Project, reported that 90% of people say that talking with their loved ones about end-of-life care is important, but only 27% have actually done so.

 

80% of people say that if seriously ill, they would want to talk to their doctor about end-of-life care. 7% report having had an end-of-life conversation with their doctor.

 

Similarly, 70% of people surveyed say they want to die at home, but in reality, 70% die in hospitals or institutions.

 

            I would urge everyone to make the time for meaningful, albeit challenging, conversations about life-changing issues.  If you find the task daunting, there are many wonderful social workers, counselors and clinicians in your community that are trained to help.  You’ll be so glad you did!

What type of support, services can I expect when placed in hospice care?

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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.