Save the Date for the 23rd Annual NHHPCO Fall Conference

Thursday November 15, 2018
8am – 4pm
SERESC Conference Center, 29 Commerce Drive, Bedford, NH 03110

22nd Annual Fall Conference: THE BEST CARE POSSIBLE: The Changing Face of Hospice

Session Handouts Now Available
Program schedule

Conference Plenary Speaker

Edo Banach, Esq., President and CEO of the National Hospice and Palliative Care Org. and Preliminary speaker at NHHPCO Annual Conference
Edo Banach, Esq., President & CEO of the National Hospice and Palliative Care Organization, will present The View from DC - Trends in Hospice and Palliative Care within the industry and the current Medicare payment system.

Other featured speakers include (click on links to download handouts):

Ravi Parikh, MD MPP: The Best & Worst Places to Die

Kimberly A. Curseen, MD: Medical Marijuana Best Practices, followed by a panel discussion

Suzana Makowski, MD: Conflict & Chaos in Palliative Care & Hospice: Language is Key in Riding the Storm

Breakout sessions include:

Understanding Hospice Compare   Martha Tecca 

EOL Care with Traumatized Vietnam Vets   Jennifer Scheriff

Compassion Fatigue in Hospice Chaplaincy in New England    Rev. Karen Boucher, D Min
Professional Quality of Life Scale ** Please take the survey if you plan to attend this session

2017 Palliative Care Survey Results   Don McDonah, MD, Chris Howard, LICSW, OSW-C

Don't miss raffles, prizes, and the chance to check out our vendors. We hope to see you there!

Our sincere thanks to the following supporters of this year's conference:
2017 NHHPCO Fall Conference Sponsors

2015 Conference Survey Results

The following questions were posed to attendees of the NHHPCO Annual Fall Conference for our 20th anniversary in 2015, including your favorite hospice moments.

1) Something made better by hospice and palliative care:

  • Pain control, decrease fear
  • Life
  • Honoring patient’s wishes around their illness
  • So many patients thank me when they are no longer in pain as they have been for months or years
  • Taking the stress off of the family members by providing comfort to their loved ones
  • Quality of life for patients and caregivers
  • Restore dignity
  • Being there with patients so they know they are not alone
  • The cultural change of normalizing death and dying process
  • The quality of medicine
  • Family and patient coping at the end of life
  • This conference
  • Speaking of the unspeakable
  • So many things… mostly comfort and peace at end of life, quality and joy filled experiences like trips to the beach, solace and care of the bereaved
  • Support and comfort of patients and caregivers
  • Better quality of life in the final stages
  • Pain, joy dignity
  • Family involvement in care
  • Bringing patients and family members together
  • Improved quality of life, comfort and peace along with reduced isolation. Even patients with many friends and family often don’t have people who can/will have real conversations about what they are fearing and experiencing
  • Comfort and pain management at end of life
  • Ability of patients and families to enjoy last moments… as I often tell them: ___ every last bit of juice out of life before you go.
  • Helping patients identify their goals… help them meet them
  • Patient’s family experience traversing one of the most emotionally and physically challenging times in their lives
  • An individuals quality of life; damaged relationships
  • End of life experience
  • Open conversations among family members and their providers
  • Patient focused quality of life
  • Overall quality of life
  • Pain management by a caring pharmacist and family/PT care by a caring palliative care/hospice group during my brothers last 5 weeks with stage 4 lung cancer
  • Pain and symptom management for all end of life diagnoses
  • Quality of life, improved pain and symptom management. Time and family/loved ones comfortable living and passing
  • Patient relationships with families and ease of symptoms
  • Families saying goodbye
  • Life
  • Coordination of end of life care for my Mom
  • I receive many phone calls from present patients and caregivers to what hospice has made such and impression

2) The most frustrating myth about Hospice and/or palliative care:

  • Only for the last days/hours of life
  • Hearing from people that morphine kills patients faster or PT will become addicted
  • The myth that dying is scary
  • That it’s only for the last few days or weeks of life
  • That it is only needed a few weeks before death
  • That it’s only for dying
  • We shorten people’s lives
  • It’s all about dying. I’m giving up
  • That we euthanize patients
  • That electing hospice care is “a death sentence”
  • That it is a death wish
  • Starting morphine is the “beginning of the end”
  • They are the same, meaning interchangeable
  • That I speed up the death of my patients
  • That we as hospice will immediately start pain meds causing a more rapid death
  • Hospice intervention means patients are “going to die immediately” or pain med treatment “kills patients”
  • Morphine hastens death
  • Hospice hastens death
  • That when you begin morphine it means you’re going to die soon, so suffer as long as you can
  • You are a hospice nurse, how sad, how can you do that?” “morphine, the patient must be ready to die”
  • He/she is asleep because of the meds”. Morphine hastens death.  Hospice takes everything away. The meds made him confused/agitated.
  • That patients will become addicts therefore a lot of healthcare practitioners do not utilize medications available/prescribed causing undue distress to the patient
  • The end must be very near and life must be over
  • That hospices are agents of death using morphine to accelerate a patients end of life process
  • It is used at the very end of life (days). Morphine is used to kill people
  • Pain meds make my loved on addicted
  • Other professionals who view hospice workers as only seeking to make money
  • Disconnect between referral sources and actual hospice services: “ The doctor implied that you would be providing 24/7 care”
  • Doctors/providers who can’t/won’t speak directly, honestly and compassionately with patients when there are no more options: “If he/she can get stronger we can try “X” treatment being said when patient has no possibility of getting stronger.
  • Morphine = imminent death
  • It means a quicker death”. “morphine will be given and end my life”
  • That end of life will come quicker
  • That you will die sooner
  • That one should be “at deaths door” to receive care
  • Morphine kills/creates addicts
  • That hospice kills people
  • That hospice concentrates on dying

3) The biggest challenge facing hospice and palliative care today:

  • Eligibility constraints, lack of primary care physician knowledge and experience having the hard conversations
  • Use these comments for ideas “needs assessment” for future conferences 
  • Money to fund these services
  • Buy in from physicians
  • Understanding the main focus is in making the patient comfortable and supporting members of the family.
  • Culture change-medical community and general community accepting the benefits of hospice/palliative care as legitimate care not “giving up”
  • Education- public and providers “Having the discussion”
  • Need for education with community, medical professionals and family communication
  • Lack of knowledge by MDs, etc. – patients not being referred early in their illness and they do not get the benefit of hospice care
  • Pain management
  • Not enough hours in the day to meet needs
  • Assisted living
  • Educating doctors to have the hospice conversation early on
  • Helping communities understand the full mission
  • Having enough well trained, educated staff to meet the increasing need for hospice care
  • Barrier of having to choose to stop curative treatments to access hospice… could be more of a transition/process if regulations were more flexible ie: “concurrent care”
  • Get doctors and families/patients to obtain services sooner than later (imminent EOL)
  • For profit hospices and false promises of what hospice is
  • Medicare- increased demands of documentation taking focus away from patients and families from administrative level to the bedside
  • Public understanding of what we do
  • Politicizing the use of opioids by legislators
  • Getting the word out about hospice care
  • Communication between client’s team members when they belong to different agencies. Multi-location interdisciplinary teams which do not work as “teams”, but as individual players. Process for team work between agencies can be developed further
  • Government regulation
  • Education of patient/families prior to end of life
  • Teaching re: use of meds to palliate symptoms/availability of meds
  • The time to educate – a patient who is put on hospice on a Monday and dies on the Tuesday
  • The physician in a nursing home who states “Hospice is not needed. Everyone will die at some point and families need to accept that. The nursing home staff provide all the care the patient needs”. He does not feel that spiritual or emotional support during life or after is needed.
  • Getting patients/families to sign on sooner than later
  • CMS financial support for good continuum of care services in the community (homecare > palliative care > hospice)
  • Getting it routinely imbedded in the continuum of care
  • Integration of palliative care earlier in the course of a life limiting illness and changing payment model of hospice so patients and families can access all it offers sooner
  • Getting the word out of all the wonderful services and support patients and their families could be receiving so much earlier and educating “old school” hospice is actually “real” hospice care that is about “presence and the ability to see the patient” (vs. quick, minimal visits because someone has Alzheimer’s and can’t be reached or doesn’t need many services)
  • False perceptions
  • Making everyone happy and staying legally intact
  • Early discussions
  • Too many people, too little time
  • Funding misconceptions of the public

4. My Hospice Heroes:

  • Mary Braun
  • The patients!
  • Elizabeth Kubler-Ross, Chan Newton, Beth Richeson
  • The individuals and families, my team members who I have worked with through the years as a hospice professional
  • The entire hospice team at Lake Sunapee VNA & Hospice
  • The LNA’s I worked with at CRVNA Hospice House
  • Dr. Ira Byock
  • The children who lead their families at EOL
  • The LNAs that get paid so little compared to the time and delicate work they do with our patients
  • Entire team at Lake Sunapee VNA & Hospice
  • Entire team who provides care
  • The caregivers
  • Hospice home health aides who develop close, trusting relationships with patients doing hands on care – they offer an essential perspective to the rest of the team
  • My team… they put patients/families first and provide amazing care and guidance at end of life. They truly “walk the walk” each and every day.
  • They are all of the hospice team- #1 nurses, LNAs, SW, Chaplains
  • Mother Teresa & Sue Houle who introduced me to hospice in 1996 when I was terrified of “Hospice”
  • APB, Jo and the rest of the Cornerstone Hospice Team
  • The hospice nurse that took care of my niece and changed my life.
  • My team members
  • Jodi Hanley, LCSW – my friend and mentor. She taught me about compassion and devotion that goes beyond any I have seen in any other individual
  • Volunteers, what they see and hear
  • My entire hospice team
  • My hospice patients
  • All the families we learn from at CHH who have cared for their loved ones
  • My patients
  • A nurse practitioner who sits with patient and family and reviews meds, outcomes, goals and is HONEST about what to expect with time span.
  • The patients and families I meet everyday who teach me how to fully live
  • Nurses and LNAs – moment to moment care & comfort with compassion and kindness
  • Joe Rotella, Porter Storey, Ira Byock
  • Janice McDermott
  • Volunteers. They are there because they want to!
  • My companions on the journey who give up valuable time to “Be” part of a strangers last few months. Giving Compassion and love without any expectations
  • The families who provide care in the homes for their loved ones
  • The LNA
  • Hospice nurses
  • Every patient, family, friend, nurse, social worker, chaplain , physician and volunteer who has been part of the mission
  • Janice McDermott – NHHPCO – and all who dedicate their time to hospice patients and family and friends
  • Balfour Mount, Jo Magno

5. My Favorite Hospice Moment:

  • When family thanks me for being honest in what to expect at end of life
  • Encouraging family to use cell phone to call family not able to visit while being aware patient may pass soon after call
  • A hug
  • Going to Tropical Smoothie with Teresa and Linda to chat
  • A patient looked at me and we shared a laugh when his family member said about morphine, “but what if he becomes addicted?”
  • Being asked to attend a death
  • Very human moments of connection and shared humanity – simple touch, shared prayer, respectful silence, knowing glance
  • When an 88 year old man taught me the difference between happiness and joy.  When speaking about the love of his life, his beloved wife of 60+ years, he described how the last two years of her life she struggled with debilitating illness and although it was not a “happy time”, it was “pure joy” to serve her, to be allowed the honor of caring for someone he loved so dearly. I too feel that the privilege of working in the field of hospice is an honor and brings me many moments of pure joy.
  • Hospice helps surviving widow/widower
  • Supporting a family whose 14 yr. old daughter was dying of cancer
  • A 102 yr. old woman telling me if a Mom is more concerned about having clean floors she is not spending enough time with her children
  • Laughing with a patient and her daughter the night before she died
  • Being welcomed into the lives of those who have a limited time.  It is a privilege to be welcomed
  • Camp Phoenix – especially “Letting Go” Ceremony at Manchester VNA/Hospice
  • My brother was himself – joking and listening to the “Beach Boys” as he slipped quietly away.
  • Oddly enough – Pronouncements – especially when family is together and goals were realized.
  • Being blessed to be bedside when someone is taking their final breathe along with family by the side – Blessed and privileged
  • Patients getting last wish met
  • Midnight ice cream therapy with care giving daughters
  • Seeing an estranged family member acknowledge the love they had for their mother before she passed
  • Taking care of my grandfather
  • Every time a person has been able to meet their goals and have quality end of life
  • Taking our hospice patient fishing….. Seeing the smile on our patients face as he caught a fish for the first time in 18 yrs.
  • When a vigil patient responds to a familiar song or prayer
  • When a patient or family member says thank you
  • When a family calls for advice about a new symptom or problem and as I explain to them what I think is going on and what to do, they say “Oh yes, my nurse told me this might happen, so I just wanted to confirm….” > anticipating guidance = less stress and panic
  • Too many… Beautiful May 1st day – PT 60 yr. old “flower child” laying on couch with musician friend singing/playing guitar, a song he wrote for her which included bird whistling (he s a professional bird singer). Windows were open and birds began chirping with the music. Patient passed moments after song ended. Many friends and family circled around her as she quietly took her last breath. Beautiful moment and family had previously been uninvolved. I was privileged to facilitate their reconnecting.
  • As the caregiver with the support of hospice for my father through his end of life process
  • Not enough paper to list all of them!
  • One of my hospice clients whom I provided emotional support to and was in a wheelchair had a smile like he was always up to something. One day during a visit we were sitting in the dining hall and he tried to convince me to help him break out of the nursing home to raid the apple orchard out back. I brought him applesauce the next week. He loved food, family, jokes and country music. I will always remember him as my baby parrot with mischief in his eyes (unique haircut)
  • When I see patients have enough energy to spend quality time with family members
  • A hospice patient, who had been discharged, no longer terminally ill, was found to be cutting down on food intake so that she could lose enough weight and be admitted back on hospice.