From the Author
I hope to address your questions on hospice matters that could not necessarily be discovered on an online encyclopedia.
Some of the information I will be covering in this section cannot be addressed satisfactorily by physicians, healthcare systems, health insurance providers, skilled nursing facilities, or by for-profit providers themselves.
The content you will find here has been gleaned from years working in the for-profit hospice industry and from consultations with hundreds of families whose loved ones had both poor and favorable experiences.
This information stems from my work as a chaplain. It is important for you to understand that I no longer work for or represent any hospice providers.
My purpose is to provide the most up-to-date, unbiased, and transparent information on the hospice industry; so consumers can make knowledgeable decisions for their loved ones.
Please watch for a more detailed account of current hospice practices in my upcoming book: “Surviving Hospice: An Expose.”
We will all die.
So it’s imperative to start thinking about who you want to manage your dying process. The optimum time to select the perfect provider should not be at the height of a life-limiting medical crisis and the rendering of a terminal illness verdict.
Q. Aren’t all hospice providers the same?
Response: Not today, unfortunately. But, back in the good old days of the 1980s and early 90s, hospice was still in lockstep with its humble, pastoral-focused inception and providers were primarily nonprofit. Consequently, the purpose and goals of hospice providers were mission-driven and service-oriented: the sole motive for existence was palliative care for the dying patient and pain management.
However, the hospice movement has been slowly invaded by Corporate America and has generated profits of 19 billion dollars a year for the profit-making providers. Therefore, eighty-five percent of providers today are classified as a profit-making business and must pay income taxes.
So, the commercialization of hospice in the last twenty years has created many different institutions that peddle hospice care: healthcare systems, for-profit corporations, health insurance companies, smaller family-owned nonprofit companies, independent for-profit home and hospice providers, and owners of skilled nursing facilities.
Q. What is the difference between a nonprofit hospice provider and a for-profit one?
Response: Generally, what makes a provider a nonprofit has to do with its purpose, goals, ownership structure, and method of generating revenue. For example, the mission of a nonprofit company focuses primarily on a service that benefits society and whose goal places patient above profit. Nonprofit companies do not pay income taxes, so they cannot distribute any end-of year financial surplus to an owner; it must be recycled back into the company to benefit the mission – the patient.
On the other hand, the goal in for-profit hospice providers is to maintain a balance between serving patients and generating income for the company: its owners, investors, and stakeholders.
Q. Which approach is more superior?
Response: That is the million dollar question in today’s hospice space. So how does a consumer who is shopping for a hospice provider know if a particular company is truly aligned with a patient-first mission and delivers on its promises made during admission?
In my book, I hope the knowledge that you gain will help in addressing that concern. I include a chapter on Vetting. It will supply you with tools that can help evaluate a provider: illuminate the quality of care, stability of the organization, its goals, and strategic vision.
Can a for-profit company balance competing priorities of providing excellent patient care while meeting the financial demands of their investors? It can; but it needs to have a concise and clear mission of placing patient over profit. All stakeholders must be pulling in the same direction–toward the needs of patients and their families. Consumers need to hire a provider they can trust.
Q. Who pays for hospice care?
Response: Medicare subsidizes most hospice care. Medicare reimburses a hospice provider approximately $170 to $200 a day per patient. Medicaid also subsidizes hospice costs for eligible patients.
Q. What specific costs are covered by Medicare?
Response: Basically, Medicare covers the cost of the interdisciplinary team, medication, basic supplies and equipment, palliative comfort measures, acute care nursing, assorted therapies, and respite care for caregivers, if needed.
Q. Does Medicare cover the costs for room and board at skilled nursing/memory care facilities or in-patient hospice care too?
Response: Nope. And this can be a sticky wicket for many families that can’t manage hospice care at home. The patient/family is responsible for the room and board portion unless nursing home insurance has been purchased. Some patients might be eligible for residential coverage from Medicaid. As well, most nonprofit providers have Foundations that can assist eligible families with coverage of the residential portion.
Q. What type of hospice personnel is provided to a patient?
Response: Each team consists of these experts: RN, Social Worker, Chaplain, CNA (certified nursing assistant), Bereavement Counselor, and Volunteer. Families are free to select whichever staff they want. Each patient will also have the benefit of the Medical Director of the provider – a certified hospice physician. The hospice company gets paid the same regardless of how many members you contract with. Families can add or subtract staff as needed during the course of care.
Q. Where can I receive my hospice benefit?
Response: Contrary to popular belief, most patients receive hospice care in nursing homes. Next, many patients choose to be in their own homes or some choose nonprofit, in-patient facilities connected with a health system, or nonprofit corporate provider.
Both of my parents died in a nonprofit, inpatient residence affiliated with a hospital system. We had an excellent experience both times. The highly trained hospice professionals that staff these facilities are in-residence 24-7. It was a great relief to my family to know that immediate pain relief was minutes away.
Q. Once hospice is hired, does the incoming team replace the staff at the nursing home?
Response: Good question. The skilled nursing facility (SNF) remains the primary caregiver of your loved one. Ideally, the facility and the hospice provider work hand-in-hand to provide the best possible end-of-life care. You are still paying the nursing home big bucks to tend to the full-time needs of your loved one.
BULLETIN: Make sure you check out the state reviews of a particular SNF before you place a loved one there: sometimes the hospice care is only as effective and therapeutic as the competency of the nursing home in which the hospice is contracted (See more in my book).
Q. Does the doubling of staff in a for-profit facility always work in the patient’s best interest?
Response: Ah, another million dollar question. My – aren’t you perceptive! Ideally, onboarding more staff for your loved one should be a benefit for everyone involved. However, some SNF’s handle it more professionally than others and it depends on staff training on both sides.
Often there is no training of SNF staff on the philosophy of hospice and palliative care. As well, nursing homes are so understaffed and when CNA’s see a hospice team bursting thru the door – they often scurry off to help their non hospice patients. One can’t blame them.
Families need to be observant and advocate for their loved ones.
Q. Wouldn’t the ideal place to die – be in your own bed?
Response: Ideally? Sure, but it depends. As a family, you must decide if you want to take on the role of the primary caregiver, unless you can afford in-home care. Otherwise, you must evaluate if you have the time, stamina, and the physical/emotional health to be available for your loved one twenty-four hours a day.
There is a flurry of hospice activity when a patient initially comes on service and then during the actively dying phase at the end; but in-between, during the normal course of service, each member of the team may visit your home only twice a week.
Q. What are the responsibilities of each member of the hospice team?
Response: The Registered Nurse is in-charge of the patient’s medical care under the guidance of the hospice Medical Director. The Chaplain addresses the spiritual and religious needs of the patient and often conducts a prayer service/eulogy for the funeral (see a more comprehensive explanation in my book).
The Certified Nursing Assistant comes twice a week usually to handle bathing, grooming, dressing, and meals. In the home setting, a CNA may also take on some light housekeeping and other household chores.
The Social Worker gathers appropriate community resources to meet the financial, social, and emotional needs of the patient; prepares legal paperwork and documents for admission/discharge, safeguards patient rights, and counsels patients and families. The Bereavement Counselor addresses the grief of family members after a loved one dies. Counseling can be provided for one year, if needed. The Volunteer will visit for companionship, socialization, and often sits vigil during the final hours, if needed.
The professional members of the team meet bi-weekly with the Medical Director to give report on the status of the patient. Most families contract for the entire team. Why not? The more staff that interacts with your loved one – the better.
Q. How does one get referred to Hospice?
Response: When the time arrives and traditional medical treatment is no longer effective or successful, your physician may suggest palliative care in a hospice setting. Two physicians must document that a patient has a terminal diagnosis with a prognosis of six months to live. At that time, you will be referred to a hospice provider or you may choose your own. Often times, word of mouth is the best predicator of a reliable and ethical provider.
Q. What does the term “palliative care” mean?
Response: While in hospice, palliative care refers to the treatment of side-effects and symptoms of the disease. The goal of this care is to provide the highest quality of life possible and preserve the enjoyment of daily activities. It addresses pain management for comfort and relief of suffering. In the last couple of years, many hospice providers have begun offering specialized medical care for people living with a progressive, chronic disease even if that patient is not yet appropriate for hospice admission.
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