Many people have heard the word but are not completely clear on what it is exactly. They know hospice is something that takes place at the end of life, often after a long illness. However, they know little else. Here is a bit of a primer on hospice care for the elderly in Nassau County.
Origins of Hospice
In 1969, Swiss psychiatrist Elisabeth Kubler-Ross wrote the landmark book On Death and Dying. She described how lonely it was for her study subjects to spend their last days in the intensive care unit of a Chicago hospital cut off from family. The book convinced many that we needed and that dying in that harsh way in the hospital was downright inhumane.
End-of-life or hospice care is meant for someone with a fatal medical condition and an expected prognosis of six months or less. To receive this special type of care, the doctor must certify that the patient meets these criteria.
Hospice care can take place in a private home, assisted living facility, nursing home, hospital, or special hospice center. The caregiving team includes physicians, nurses, social workers, trained volunteers, clergy and occupational, physical, and speech therapists.
The focus of care shifts a great deal. Up until this point, caregivers focused on healing and fighting the disease. This new stage emphasizes the comfort and tranquility of the patient as they prepare to pass on. To that end, treatment medication is suspended and pain medication takes center stage. Symptoms are managed and emotional and spiritual support are provided.
The vast majority, almost 84%, of hospice patients are 65 or older which is likely why Medicare often covers it. In fact, more that half of all Americans pass away in hospice care. And, most of the time this happens at home.
However, to get coverage, you must stop medical treatments. Since many of the sufferers of the most common and serious illnesses such as cancer, heart failure, and lung disease end up in hospice, it is important to plan for that eventuality as you file other important end-of-life documents. Therefore, as you put together your will and health care proxy, you need to make your wishes in terms of hospice care clear to your loved ones. Living wills and advanced directives can be essential for making sure that all will follow your wishes. Include instructions for such things as DNR (do not resuscitate) orders and the inclusion or exclusion of certain medical treatments.
Seamy Side of Hospice Care
Unfortunately, there has been a lot of publicity about the fraudulent activity of some who take advantage of vulnerable patients and families at this stage. Since patients must refuse treatment or curative care, the hospice business devolved into the segment of business in the American healthcare industry with the highest returns for the least amount of cost and effort. Furthermore, with much of the care taking place in the patient’s home and the day-to-day care conducted by family members, it is easy to keep a tight grip on overhead costs. Also, the structure of Medicare allows for less sick patients to receive care and for their doctors to re-certify their eligibility over and over again.
Whereas for profit providers made up 30% of the market in 2000, that number jumped to 70% in the next two decades. It’s big business. That spells big incentives to bring in new patients all along the pipeline, including the certifying doctors. And, to round out the picture, regulation and oversight have not kept pace with this growth.
Of course, what constitutes dying with dignity and an appropriate death varies from person to person, family to family, community to community. There are those who have been convinced to give up curative care to end their lives with what is termed ‘dignity’ prematurely.
With so much money sloshing around, it is not surprising that some who really do not need it go into hospice care. There have been cases of hospice actually being the cause of further debilitation, even drug overdoses. Luckily, some have emerged from hospice care to live productive lives weaned from the narcotics they received in hospice. Unfortunately, others have not been so lucky. Conveniently for the facility, hospice patients do not usually receive autopsies.
What to Do
Still, there are actual patients who legitimately require hospice. They are terminally ill and need to live out their final days as comfortably and as humanely as possible. You need to properly investigate to find reputable facilities. To that end, there are hard questions that need to be asked to determine the quality of the hospice care you are thinking of entrusting your loved one to.
The Hospice Foundation of America lists these 17 questions for finding the most appropriate hospice:
- What do others say about this hospice? References help!
- How long has the hospice been in operation?
- Is the hospice Medicare-certified?
- Is the hospice accredited, and if required, state-licensed? (Accreditation by JCAHO or CHAP is not required, but helpful to determine standard of care.)
- What is the expectation about the family’s role in caregiving?
- Are there limits on treatment currently being received?
- Can the hospice meet your specific needs?
- Does the hospice offer extra services beyond those required?
- How rapid is crisis response?
- Does the hospice prepare families for the death of a patient if there is not a member of the hospice team on site?
- What are the options for inpatient care?
- If the family caregiver gets really exhausted, can we get respite care?
- Are their MDs/RNs certified in palliative care?
- How are patient/family concerns handled? (Note: To file a complaint about hospice care, visit https://www.medicare.gov/hospicecompare/#about/contacts)
- How does the hospice measure and track quality?
- What are your general impressions of the people you talk to at initial contact?
- What kind of bereavement services does the hospice offer?
Choosing a Hospice: 17 Questions to Ask by Naomi Naierman and Marsha Nelson was originally published on the website of the American Hospice Foundation. © American Hospice Foundation. All rights reserved. Hospice Foundation of America updated some content.
The AARP offers more suggestions for questions:
- Does its medical director make home visits to address complex symptoms?
- How — and how quickly — does the hospice respond to patient crises after hours?
- Does it provide all of the levels of care mandated by the Medicare hospice benefit — including continuous care in the home for periods of crisis and inpatient hospice care when needed to bring complex symptoms under control?
- Is the hospice accredited by one of the three national organizations that survey hospices on their quality? (This means it went above and beyond the requirements of Medicare.)
- Are the hospice’s professional staff individually certified as experts in their field by their recognized professional bodies?
- How robust is the hospice’s volunteer program and what does it include?
Home Health Aides and Companions
When the family cannot cope with the demands of care for their loved ones in hospice, outside help can be a godsend by providing relief for the family. With the home health aide or companion on board, the family can focus on bonding and saying their final goodbyes at this unhappy time.
David York Agency Homecare Helps Seniors in Nassau County
At David York Agency, we understand the many challenges and risks faced by the aging and elderly. We are dedicated to our clients. We provide care to support them through all of those ups and downs. At David York Home Healthcare Agency, extraordinary service is what sets us apart from other companies in Nassau County that provide in home healthcare services.
DYA we could provide direction as to how to manage the total care of your senior loved one. Whatever your care needs, we are there for you, always striving to exceed your expectations. For more information about David York Agency’s qualified, compassionate caregivers, contact us at (718) 376-7755. A free phone consultation can help you determine what services would meet your needs. We aim to provide you and your loved one with the assistance they need. If you’d like to hear more from us, please like us on Facebook or follow us on Twitter or LinkedIn.