In 1978, President Jimmy Carter announced that November is now National Hospice and Palliative Care Month. According to the National Association for Home Care & Hospice, this is a time to honor the “millions of nurses, home care aides, therapists, and social workers who make a remarkable difference for the patients and families they serve.” When November was first dedicated to recognizing the efforts of those who provide end-of-life care – hospice patient numbers were in the thousands. Today in the United States, we provide care to more than 1.65 million people.
With over thirty licensed Hospice companies in the Oklahoma City Metropolitan Area, and more agencies opening their doors every year, it is important to be educated on the services that Hospice does and does not provide.
Hospice is support for terminally ill patients as well as their families. This is a Medicare benefit as long as an individual meets the Medicare requirements to access the benefit, which includes; obtaining care from a Medicare-certified hospice, attending physician and hospice physician certifies the patient as terminally ill with a medical prognosis of 6 months or less to live – if the illness runs its normal course (the patient cannot be seeking curative measures) and the individual or their appointed decision-maker, signs an election of the benefit of hospice.
The Misconceptions of Hospice
Giving Up on the Patient:
Hospice is about living in comfort and dignity in the time an individual has left. Electing to start hospice can be a difficult decision, especially for family members and providers that have been involved in a patient’s care for extended periods of time. Once the prognosis changes from being able to manage a terminal disease to being in the last months of the disease process – it’s hard for individuals to accept the natural trajectory of the disease process.
Electing to start hospice is not giving up. Diseases that are hospice approved diagnosis’ cannot be cured. These include but are not limited to: Congestive Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD), Cancer, Amyotrophic Lateral Sclerosis (ALS), Acquired Immune Deficiency Syndrome (AIDS), Protein Calorie Malnutrition (PCM), Alzheimer’s and most recently, Covid-19.
Upon admission to hospice, the patient and their surrounding support system are electing to add more care at the end of life to increase the quality of life. Ask any hospice employee what is heard most often by families, and you will typically get the response “We wish we would have called hospice sooner.”
With hospice in place, the patient’s pain and symptoms are managed, with focus also being put on their spiritual and emotional needs at the end of life.
Hospice Hastens Death:
In the 2021 edition of National Hospice and Palliative Care Organization (NHPCO), it was reported that 1.61 million hospice patients were “live discharges” which means that they no longer met eligibility requirements and were discharged because they were showing improvement. There are occurrences that once a patient’s pain is managed, they are receiving not only care for their physical needs, but also their psychosocial and spiritual needs as well, which may lead to improvement and discharge from hospice services.
Often, patients are starting hospice services later in their disease process. With most patients (75%) only receiving care for 85 days or less, when the benefit is for six months. This paints the picture that the majority of those with terminal diseases are electing the benefit sooner rather than later. It is important for patients and their families to understand the benefit of electing hospice upon eligibility, so that they can access all the benefits during those last months of life. Although there is no evidence that hospice “hastens” death, there are studies that show that patients who receive hospice care may live longer than patients who do not.
Terminal restlessness can occur at the end of life, and it is common to use a sedative and/or an anti-psychotic to help the patient. Often, upon the receiving of these medications, it is not uncommon for the patient to then pass, as they are now comfortable, and their restlessness is managed. This may cause families to feel that hospice has hastened their loved one’s death, but the reality is that they were just made comfortable enough to pass without agitation.
Once elected on hospice, you can’t discharge off services or go to the hospital:
Hospice is a choice. At any time, a patient (or decision maker) can sign a revocation form to discharge services. Going to the hospital is also a choice that is never taken away from a patient, and if admitted, the patient would automatically revoke from hospice and can sign-back up upon discharge. However, this would be an opportunity for education with the patient and the hospice agency as the purpose of electing hospice is to stop going to the hospital at times when a nurse can come to the home and help manage symptoms. The goal of Hospice is to become a patient’s “911” that can triage if their own nurse can provide the needed care, or if the patient should go to the hospital.
In times that pain cannot be managed at home, most hospices have contracts with a hospital to provide General Inpatient Care, which allows a patient to go to a Medicare certified hospital, hospice inpatient facility or nursing facility that has a registered nurse available 24-hours a day. In one of these settings, the patient can be provided acute symptom management without revocation of their hospice benefit as the hospice staff would still be able to see the patient and manage their care in an in-patient setting.
Patient must give up their Primary Care Physician:
Patients with long-standing care provided by their Primary Care Physician (PCP) may have concerns of not being able to see their PCP if they start hospice care. However, a patient’s personal physician can choose to be a part of the hospice care team and work closely with the hospice physician. If the PCP is willing to continue to be part of their care, then they would not be excluded.
What a family must understand is that:
Their PCP must be willing to continue following the patient as they will need to be available for calls regarding the patient’s care, and…
The hospice agency can continue to provide updates to the PCP, while allowing the hospice physician to oversee the patient’s plan of care – if they elect not to continue to provide care.
This can be discussed and decided upon during admission and with the PCP’s approval to follow their patient or elect to just receive updates from the agency.
Hospice is for the last days of life:
Contrary to myth, hospice care is not just for the final days of life. Upon initial admission to hospice, there are two 90-day periods followed by an unlimited number of subsequent 60-day periods. Once a patient is entering their third benefit period and every recertification period after that, a face-to-face by a physician or a hospice nurse practitioner is required, documenting a continued decline to support a life expectancy of 6 months or less.
“I remember calling a patient who was leaving the hospital once and had been referred to hospice,” shares Mandi Schulz with Affinity Hospice and he told me ‘I’m not dying yet but I’ll call you when I’m dying.’ When I explained to him that hospice isn’t just for when you are dying and then asked him why he went to the hospital, he shared with me that he had cancer and was in pain, so he went to the hospital. I explained that pain management was what hospice did well and that the goal would be to keep him out of the hospital and manage his pain at home. Since he had cancer and was not seeking curative treatment – he would be eligible for the benefit and didn’t need to wait until he was at the last days of his life.”
What Schulz experienced with this specific patient is something hospice employees come across often or are often told “I’m not ready for hospice.” Many families don’t call hospice until a loved one’s passing is imminent, many say they wish they’d known about hospice sooner. Being ready is something that patients and their families don’t always have the luxury of as death isn’t waiting on us to determine when it arrives, so starting care sooner rather than later is recommended by hospice providers so that they are given as much time as possible to manage expectations of the patient and their family as well as developing a good relationship.
What to Know When Looking for a Hospice Company
With so many agencies to choose from – how does one determine which hospice to start care with? Since hospice is a regulated program to provide care for people who are terminally ill and support for their families, there are specific expectations from Medicare on care that must be provided, to include:
A hospice team that sets up a plan of care, that includes some or all of the following:
Nurses or nurse practitioners
Physician and occupational therapists
Other services that can be included in your plan of care:
Grief and loss counseling for patient and/or family
Short-term inpatient care (for pain and symptom management)
Short-term respite care
Any other Medicare-covered services needed to manager your terminal illness and related conditions, as recommended by the hospice team
Optional Services to consider when looking for a hospice company:
Every hospice is required to provide volunteers for at least 5% of total patient hours, but not every agency is treated equally with what they can offer with their volunteer program. Determining what is important to you and finding a hospice that can meet your needs is important.
Hospice volunteers can provide services in direct support (time with patients), clinical support (clerical and other services) and/or general support, which can be outreach, education and more.
You can visit each hospices website to learn about their volunteer programs.
End of Life Program:
What is the company policy on how to handle care at the end of life? In the hospice industry it is often stated that there is no magic eight ball to identify when a patient will pass away. Often there are indicators of those final days, with each hospice company having their own guidelines for how to manage a patient’s care at end of life.
Knowing if the company provides staff at end of life to sit with a patient is something that may be important to you, If it is, knowing whether it will be a member of the hospice staff or someone hired from an agency is something to ask.
We Honor Veterans is a national program that hospices can elect in to and ‘earn stars’ by completing certain activities using practical resources to increase their ability to serve Veterans.
Since death is a topic that no one really wants to talk about, it can be a barrier to getting eligible patients enrolled in a timely manner. You should know that it’s normal to be afraid when the conversation of hospice begins and that hospice teams are in place to help everyone involved in the process. It aims to provide comfort and peace and helps improve the quality of life for a person at end of life. In addition to caring for the patient, hospice cares and supports the family – even after the passing of their loved one. One of the most special components of hospice is to support the family through education, emotional support and being a comfort during the difficult time of losing your loved one.
For more information on the specifics of hospice or to find an agency near you – visit the National Hospice and Palliative Care Organization at https://www.nhpco.org.
History of Hospice Timeline
1963 – Dame Cicely Saunders first introduce the idea of specialized care for the dying, to the United Stated, during a lecture at Yale University
1967 – Dame Cicely Saunders creates St Christopher’s Hospice in the United Kingdom
1972 – Elisabeth Kubler-Ross testifies at the first national hearings on the subject of death with dignity, conducted by the U.S Senate Committee on Aging (Kubler-Ross also published On Death and Dying, which identifies the five stages through which many terminally ill patients progress)
1974 – The first hospice was opened in the US. Connecticut Hospice in Brandford, Connecticut was founded by Florence Wald, two pediatricians and a chaplain.
1975 – First National Symposium on Hospice Care is convened in New Haven, Connecticut.
1978 – National Hospice Organization (NHO) is established to promote the concept of hospice care.
1980 – The W.K. Kellogg Foundation awards a grant to the Joint Commission on Accreditation of Hospitals (JCAHO) to investigate the status of hospice to develop standards for accreditation.
1982 – Congress includes a provision to create a Medicare hospice benefit.
1983 – Hospice regulations established four levels of care and outline the cost components of the routine home care rate.
1985 – Medicare Hospice Benefit is made permanent, and states are given the option to include hospice in their Medicaid programs.
1991 – Department of Defense authorizes coverage of hospice care in military hospitals.
2000 – NHO changes its name to National Hospice and Palliative Care Organization (NHPCO).
2002 – 25th Anniversary of the Medicare Hospice Benefit
2004 – More than 1 Million Americans with a life-limiting illness are served by the nation’s hospices, the first time the million-person mark has been crossed.
2007 – Research published in the Journal of Pain and Symptom Management reports that hospice patients live an average of 29 days longer than similar patients who did not have hospice care.
2007 – The Worldwide Palliative Care Alliance is formed to address global care needs at the end-of-life. NHPCO becomes a member.
2010 – We Honor Veterans, a pioneering campaign to help improve the care Veterans receive from hospice and palliative care providers, is launched by NHPCO in collaboration with the Department of Veterans Affairs.
2014 – Forty years after the creation of Connecticut Hospice, NHPCO and its affiliates celebrate 40 years of hospice care in the US.