Destigmatizing Hospice
Hospice care is one of the most feared and misunderstood of medical benefits. I will attempt to dispel myths surrounding it, and shed light on the opportunity provided to sustain comfort at the end of life. In addition, I will address how to know if you are receiving appropriate care through your hospice provider, and what to look for in a hospice. Be mindful that in most cases, hospice is a for-profit business. There are many competitors in this space that are more concerned with achieving bottom line results -- because they are public companies reporting profits to shareholders -- than the quality of care being provided to their patients.
Hospice is usually initiated as a suggestion by the physician treating his patient diagnosed with a life-limiting disease, such as cancer, heart failure, or other. The basic criteria that triggers the initial recommendation is that to the best knowledge of the physician, the patient has 6 months or less to live, and all life-sustaining treatments have been exhausted, because they are no longer working. The physician’s order is then referred to a hospice company which initiates an evaluation process, usually completed by their own physician, RN, or Nurse Practitioner. Each disease carries its own specific set of criteria which must be satisfied to be covered by hospice under Medicare guidelines. If the patient is over 65 years of age, Medicare pays 100% of all costs associated with hospice care. The patient and family will be introduced to services by a liaison, who assists the family to understand the coverage, and obtain the signed legal consents, which gives that hospice provider authorization to access the patient’s medical chart and evaluate the patient. In any case where Medicare is the payer, the individual has the right to choose his own hospice. There are about 150 companies in Orange and Los Angeles counties, each vying for patients. You can interview as many as you like to find one you prefer. Physicians, Social Workers, and Case Managers at the hospital will often have a relationship with one provider and will try to steer you to use them, but you are under no obligation to do so...it is your right to choose who you go with. Although it is against the law and unethical, many referring physicians receive some sort of incentive from the hospice provider they refer to. In addition, you are also under no obligation to remain with a hospice company if you are not satisfied with the care being provided. You can change at any time. You also have the right to stop the service at any time.
So, what exactly is provided to you? The goal of hospice is specifically to keep a patient comfortable and free of pain, and by Medicare mandate, it is “to bring pain under control within 48 hours of admission.” Pain medication is only given as needed to control pain, but a myth persists that “patients are drugged up and left to die.” The real goal is comfort…the life-limiting condition and associated complications will eventually cause death, not the hospice care itself.
Included are any medications needed to achieve this goal. In addition, all medical equipment necessary for your comfort is ordered and should be delivered the same day. These items include a hospital bed, Hoyer lift, oxygen, wheelchair, walker, and diapers. These can be delivered to any setting the patient is discharged to, whether it be home, a board and care facility, or an assisted living facility. Patients do not typically remain in the hospital while receiving hospice care. Hospice will also address other needs, like depression, anxiety and a variety of symptoms and issues. In some cases, people may also continue receiving kidney dialysis if it relieves symptoms not related to kidney disease and promotes comfort.
The patient will be transported from the hospital to their home by ambulance. The ambulance transport is covered. The levels of care are determined by the ongoing assessment by the clinical team, supported by the attending physician: Routine, Respite, or Continuous. Hospice provides emotional support via a Chaplain or social worker, volunteers provide music therapy, companionship, reading and light housework. Volunteers also possess multiple language capabilities.
For Routine care, a nurse will make 2 visits per week, a certified home health aide (CHHA) 2 visits each week for bathing support, and a volunteer will visit once weekly for a couple of hours.
For Respite care, if the family is primary caregiver to the hospice patient, after 90 days they will qualify for placement at a skilled nursing facility (SNF) for 5 days so the primary caregiver can take a break, attend to family business, etc. The ambulance transport to and from the SNF is covered. This respite care can occur once each billing period.
Continuous care is one of the many points that sets hospice providers apart. It is designated when there is an issue of uncontrollable pain, anxiety, agitation, bleeding, etc. A licensed nurse remains at the patient’s bedside 24/7 until the issue is resolved. Respite care can occur multiple times during the patient’s hospice tenure. The reason this is where “the rubber meets the road” is that providing this level of care is very costly. When it is the appropriate level of coverage, a quality hospice will put it in place and keep it in place as long as necessary.
I have worked closely with many hospice providers in Orange County, CA. The one that stands out above the rest in my professional experience is OC Hospice. OC Hospice was founded by health care professionals that have extensive experience in the industry; unfortunately, their experience caused them to be deeply disappointed by the minimal level of professionalism, and lack of true compassion, integrity, and knowledge that they observed within the industry. Lyn Kennedy, Founder and CEO, has put a structure in place that ensures that “the patient’s wishes are known and respected,” and keeps the patient comfortable. It is a family-owned business, where patients and their families have access to the owners should an issue arise. The key element setting them apart is that OC Hospice cares. I have learned of extreme measures taken by their staff and volunteers to assist families who needed extra help. Sometimes the loved one who is dying is the sole provider for the family, and the family is not only coping with illness and impending loss, there are also serious financial issues impacting the surviving family.
The Life and Hope Foundation, founded by John Gutierrez, co-owner at OC Hospice, aims to find ways to help and support some of these families.
In summary, hospice benefits are best utilized earlier, rather than later, in the patient’s timeline. The reason for this is that benefits that are available to the family will help make the patient’s transition as comfortable as possible. It has also been determined that patients that are admitted to hospice care sooner, rather than later, live an average of 19 days longer. It is also important to understand that hospice care can continue for as long as the patient keeps “qualifying,” or keeps declining.
If you have detailed questions about hospice care, reach out directly to Sylvia Adler, Liaison at OC Hospice: sylvia@ochospice.com or 949.232.8742.
For general information go to https://ochospice.com. For more information about Life and Hope Foundation visit https://lifeandhopefoundation.com.
