Nurses are the front line of hospice care, serving patients in their homes and other settings on a daily basis. They have their finger on the pulse of hospice.
Hospice News recently sought the insights of a nurse and certified dementia practitioner about care provided in non-hospice settings such as assisted living and skilled nursing facilities. This individual started a career in hospice care 40 years ago and has also worked as an advocate and educator dedicated to improving seniors’ quality of life.
Hospice News’ “Confessions” interviews give hospice and palliative care professionals a space to sound off on the pressing issues that affect their businesses and patients. This piece has been condensed and edited for clarity, as well as to protect the anonymity of today’s subject.
For the purposes of this interview, people dwelling in assisted living are called “residents,” while those in skilled nursing are called “patients.”
Our conversation will center on your experiences seeing patients aging in care facilities. Can you tell me about your experience working in these settings?
My experience has been primarily in assisted living and memory care facilities. Assisted living, which came of age in the mid 1990s, was meant to be a transitional resident preferred facility that retirees would move to prior to needing 24 hour skilled care in a nursing home.
Assisted living and memory care facilities are based on a social model, rather than a medical model. The cost of assisted living and memory care is paid for privately by the resident or family and is not covered by any insurance, Medicare or Medicaid.
The social model of assisted living was designed to “add on” care as it was needed. For example residents that initially moved in while ambulatory could later add on the cost of assistance with transfers when they needed it. However, these communities have become the last stop home for many residents that were resistant to nursing home transfers as they aged. Residents decide what their preferences are rather than this being driven by the nursing or care staff.
For example, residents looking to move into assisted living can opt to administer their own medications, shower when they desire, do their own laundry or have these items included in the “care package” that is set up by an assessment with the wellness manager prior to move in. The amount of assistance that residents want to receive is based on their preferences. The cost of the ‘package” that is chosen will be added to the room base rate and becomes the monthly fee that the resident will pay while in the facility.
Many times the family will discuss these preferences with the resident or actually be present for the assessment so they can encourage or discourage the resident for certain add on items like, room trays, dry cleaning, assistance in walking to activities, assistance with dressing, undressing, transfers, dining, etc.
It has only been in recent years that assisted living has had full time nurses on staff. Nurses working in assisted living in Texas can only perform as a trainer or teacher to residents or unlicensed staff such as nurse’s aids, medication technicians, or dining assistants. The regulations for each state determine the scope of the nurse’s role in assisted living and memory care. It is for this reason that residents are referred to home health agencies or hospices while living in these facilities.The hospice or home health care is billable under Medicare and is not covered by private pay from resident or the facility.
The nurse’s main role is in keeping the care packages compliant with the residents’ needs in order to continue to drive revenue for the corporation.
Skilled nursing, is a medical model, driven by revenue from third party insurance including, Medicare and Medicaid. The patient has had a medical event such as a fall, wound, illness that occurred prompting hospitalization and then discharge to a skilled nursing facility or rehab. The skilled nursing stay will attempt to get the patient back to a baseline of physical ability.
There is a limit of insurance coverage for the patient in skilled nursing. After the patient has reached the limit of covered days, dependent on insurance, a referral to assisted living may come. However, it is the patient’s decision, whether or not to move into assisted living.
Do patients receive hospice or palliative care in these facilities? How does that compare to receiving care in their homes and communities?
Yes, both assisted living and skilled facilities can receive hospice or palliative care services. I have had the experience of being a hospice care nurse in both home and facility environments. The major difference is whom the hospice nurse is instructing regarding end of life needs. In the home it is a family member who is receiving instruction, while in the care facility it is the staff member, who is often more experienced in end of life instruction.
What can hospices and palliative care providers do to better serve these patients?
The best thing the hospice and palliative care providers can do is show up when they have committed to do so. There are always time factors that come up related to travel, or other reasons. However, the resident is waiting patiently and will not leave the apartment to engage in activities or even eat if he or she knows his hospice nurse is coming.
Many times the hospice nurse does not call if running behind schedule, knowing the resident is in the facility and not going anywhere. This is so disrespectful to the waiting resident. A simple phone call would improve the resident’s day so much and allow the resident to engage in other activities rather than just be waiting for a visit that may not happen at all.
What opportunities exist for hospices for improving access to care and quality of care for these patients, particularly at the end of life?
The quality of care could improve if durable medical equipment (DME) were delivered at the time of admission to the hospice, whether the resident needed it on the date of admission or not.
I have had many instances where a resident’s condition changed quickly, and I did not have access to a hospital bed, oxygen, commode chair, etc, because the hospice did not get these items in place upon admission to hospice. The hospice staff will say the resident did not want these items, so they did not deliver, and of course the hospice saved money by holding out on the delivery. I have had untold number of conversations with hospice staff and residents about this and know that simply explaining why these items are important at the time of admission will cause them to accept the delivery of these items, prior to need.
While the hospice staff is scheduled to come to see the resident on a routine basis — which is crucial to the resident’s plan of care — significant events, such as shortness of breath, increased pain, anxiety, etc, will occur as the resident ages and progresses in his disease. It is crucial for the facility to have the equipment that residents need, when they needs it. Unlike hospitals, these facilities do not have access to extra DME. Having this equipment in place already does much to improve the quality of the residents’ care and decreases anxiety knowing that it is available quickly as they need.
What have been your observations of patients in these facilities, regarding the care they receive and their general well being?
The care the resident receives in assisted living must be consistent with the care package agreed upon prior to move-in. In other words, residents will get what they pay for. If they do not, then a complaint can be filed with the state regulatory agency and an investigation will begin.
More often than not, residents can be resistant to admitting their needs because they do not want to pay for the care. There is much conversation revolving around this dilemma and usually ends up with a family member taking over power of attorney for the resident if family does not think the resident is receiving enough care. This is an area of controversy that can involve the resident, family and nursing staff.
Often, the resident will assume that all care is covered and will try to complain to staff and family that he is not receiving care, when he actually does not agree to pay for the care. Therefore it takes much conversation between administration and the resident to resolve this conflict. The best time for this resolution is prior to move-in, so that the care needs are covered appropriately and the resident is made aware of the cost of this care. The new resident is always surprised by the cost, which depending on the care package, can range from $4,000 to upwards of $8,000 to $10,000 monthly.
For example, if residents insist that they can administer his own medications, and the families know that they cannot, a self-medication assessment can be requested by a family member in an effort to show the resident that self-administering medications is not safe. Because care is given and paid for as matter of assisted living regulations, hands on care is fairly consistent in these facilities.
Skilled nursing however can be another challenge. Administrators are receiving pay from their third party sources and are always trying to save labor costs by having staff work with a greater number of patients.
Do you feel that these patients have clinical, psychosocial or nonmedical needs that are not being met?
Yes, definitely. Often clinical needs are not addressed because residents are in denial regarding a certain symptom that they prefer not to discuss. If the resident is not willing, the need will not be met. A skillful nurse will be able to assess the resident by asking open ended questions to reflect on the clinical needs that encourage attention.
Psychosocial needs are often more difficult. For example, In every facility I have worked in during my 40+ years of nursing, there has always been a “mean girls” table in the dining room. This is much like our junior high experience where there was always a table of students that talked about everyone else and somehow deemed themselves better than others. These were usually the snobs that could turn on and off the charm, depending on whom they were speaking with at the time. It is no different as residents age.
As an administrator, I have had to be the “ mirror” to the mean girls. Speaking to them one by one and reflecting their behavior back to them, in order for them to process how they were coming across to especially new residents, who were trying to find their niche in their new home.
There is a lost hope that occurs in assisted living as residents realize this last stop of a home environment may not be as long as they once thought. The thought of running out of life long savings, having to depend on family resources, or the fear of having to move to a Medicaid-only nursing home, plus physically aging, do not provide much joy for the aging senior.
Conversations and resources that can encourage them are essential for seniors. Activities in which those attributes are respected are essential. I have seen depressed residents light up and gain new perspectives when they are given engaging activities that make a difference.
For example, when ladies in a sewing activity make baby clothes for the local children’s home and then have visits by these children wearing these clothes, that new significance can be a big boost of hope and a reason to contribute every day.
Spiritual conversations are often overheard and encouraged by staff. Pastoral or layperson visits can truly make the difference in these residents’ final days.
Know someone who’d want the opportunity to speak freely about the current state of hospice — or want to sit down yourself? Reach out to firstname.lastname@example.org for consideration.