Next Tuesday in the MBR at 3PM
Questions and Answers about Hospice and Palliative Care
This is an informal discussion intended to define and clarify what hospice might “look like” if you, a family member, or loved one were interested in receiving hospice services. We will talk about the Hospice Team, the Hospice Medicare benefit, and eligibility criteria. An overview of Palliative Care will also be provided. Time will be left for discussion, and questions and answers as well.
Scott Lavis, LICSW is the Manager of Operations for Kline Galland Hospice and Palliative Care.
Suggested questions for CCRC residents to ask of a hospice marketing representative:
REGULATIONS
Nursing home care is regulated by state and federal statutes and legislation. Hospice care is basically not regulated. The administrators of long term care facilities which provide Skilled Nursing are accountable for the quality of life and quality of care of their residents as well as their hospice patients. How does the care differ?
RECOURSE
What recourse do I or my personal caregivers have if the hospice care is not what we were told it would be? To whom do we report if we have a concern or complaint?
If I or my personal caregivers must assert my rights will my care be compromised?
The Centers for Medicare and Medicaid issue a quality control survey to the patient’s relatives/personal caregivers AFTER the patient’s death. Does this survey improve patient care?
How is hospice quality of care measured? Can we verify on-site inspections as we can with nursing home care?
ACCESS TO THE DOCTOR and MY RECORDS
A hospice doctor will oversee my care, though perhaps from afar. Will I or my personal caregivers meet or talk to this doctor in person? (The hospice nurse may refer to this doctor as “the provider”.)
Will I be given a summary of my hospice nurse’s assessments of my health status?
Will the hospice staff edit and correct any mistakes and pejorative statements on these summaries? (The nurse’s report may reflect information based on hearsay rather than their own knowledge or experience.)
HOSPICE vs. NURSING HOME CARE?
Residents of a CCRC or nursing home may be pressured to – or even told they must – receive hospice care. (According to one family, their resident was told they must have the surgery recommended by a doctor or “enter hospice.”) How does a long term care corporation benefit when a resident enters hospice?
Are hospice staff recognizable by their name tags and/or their apparel. In this way everyone in the vicinity is better acquainted with the work they do. Why would a CCRC make hospice staff indistinguishable from everyone else.
ADVANTAGES and DISADVANTAGES
How is hospice care superior to the care the facility staff can provide?
If I am not in hospice, will the nursing staff administer the same pain medications which hospice would provide if should I need them (e.g., morphine)? In the same quantity?
The doctor may prescribe “X pain medication as needed” what will I or my personal caregivers do if it is after hours and the nurses refuse my family’s request for more pain relief? If my personal caregiver has reported neglect and mismanagement to the state nursing home surveyors, might this be the facility staff’s ultimate retribution?
Which CCRC services are no longer available to a resident when they become a hospice patient?
Will physical therapy and occupational therapy (or at least range-of-motion exercises) be provided to me if I will benefit from this care?
TRUST BUT VERIFY?
Can you provide us with names of any residents or their family members in this or any other facility who are familiar with your work?
No? You must not violate HIPPA regulations?
What is the role of the Long Term Care Ombudsman in advocating for the rights of hospice patients?
The speaker on Tuesday is not a “marketing representative.” He is the Manager of Operations at Kline Galland Hospice. I invited him to speak here after I heard his presentation about Hospice at a training/education session for King County Ombudsmen. He explains Hospice services and palliative care in a talkative Q&A session. Hospice most commonly takes place in the home or a home like environment. I have presented to at least 50 groups in the Seattle area and have talked to at least that many families about their experiences with Hospice. I’m sure, as is implied from the questions, that there are some negative encounters – but the program in general is a well received blessing staffed by angels. Personally, I have made several home visits to hospice patients and my family members have volunteered as well.
Our particular CCRC allows the patient/family to select (or change) which hospice they might wish to use.
I attempted to care for terminally ill lung cancer patients before we had Hospice as a Medicare benefit. Those patients felt abandoned and fell into the ER’s. What is offered now is light-years better. So I don’t find a need, in my own experience anyway, to be confrontational or to fear retribution.
JdeM
Readers,
The substance of my “argument” speaks for itself. By now Jim likely knows of my years as a community long term care ombudsman. And of the years my elder spent in a combination of my home, an adult family home and an unnamed CCRC’s nursing home. Surely I am not being bated to name names.
Most of the Happenings’ readers, I would guess, are concerned with hospice care in a CCRC, rather than in a “home or home-like setting”. My hospice experience is based on in-home, in adult family home, and in two CCRCs. I have spoken with well over fifty families in my elder’s twelve years of long term care and nearly three years of off and-on-hospice care. Plus her companion’s hospice care – two stints. I organized a short-lived family council at a nursing home. I have spoken at nursing home staff meetings and the Group health Senior Caucus (no, not as a main speaker, though I’d welcome that too.)
We are looking at hospice. And, why not?, the long term ombudsman program as well. Both programs are tasked with assisting and advocating for the recipients of long term care services. Employees and administrators of both programs, much like long term care employees/administrators have wide latitude in how they interact with the personal caregivers of their clients. Unfortunately, there are no rules regarding the treatment of personal caregivers. Even the ombudspersons can blow them off. The commonest way to do this is to characterize family members’ observations, concerns and complaints as bothersome – “confrontational”.
And that sort of marginalizing is what the March on Jan. 21st was all about. We can show respect for one brave soul who dares to comment openly. Your speaker on Tuesday (yes, he is selling you something) knows me well by now.
I am, of course, curious to know how the hospice presentation and discussion went. I must add to my earlier comments that there are many aspects to this topic that we skipped past. The most relevant omission I think of is the question of the duration of the hospice experience.
I have read that the most common length of time a patient spends on hospice is something like three or four days (I don’t have time to fact-check this). Families do not want to declare, or accept a diagnosis, that the patient has X number of days left to live. And even the professionals in this field cannot make this call in most cases.
A number of patients enroll in hospice because their doctor and/or a caregiver recommends it. The decision to sign up may be an bafflingly arbitrary. Doctor sees a heavily burdened caregiver, especially one caring for the patient at home, and offers to approve the request for more professional assistance. Enter hospice workers at your doorstep.
For anyone who has hospice visits for more than a few days – possibly up to six months or more – there will be innumerable interactions between the staff and the patient and the patient’s caregivers. If that patient is also residing in a long term care facility the interactions get that much more complex. The angel is in the details!
How to improve our chances of a successful hospice experience? I submit that “stakeholders” talk to one another about what “positive” and “negative” mean here. The discussion requires “adults in the room” – beyond inviting speakers whose conflict of interest will compromise their pitch. And by the way, in my tenure as a King County LTC ombudsman, spokespeople representing the LTCOP were (rarely) asked to speak to the industry (ltc staff and administrators or an ltc trade organization). And an investigative reporter, Michael Berens, spoke to the ombudspersons about his Seniors for Sale series in the Seattle Times.
http://old.seattletimes.com/html/seniorsforsale/2010939195_seniors31.html
To my knowledge, administrators of nursing home divisions were not featured as speakers at ombudsperson meetings. Ombudsperson are trained NOT to be seen talking to an industry employee too much. It might look too cozy. Yet more so, when the same administrator is promoted by an ombudsman as a leader for the residents.
Thanks for the Happenings as a platform for all of us, Jim. I do realize that Skyline residents have their own in-house communication systems. As it should be.