When it comes to the end of life, most people have a very clear picture of what they want. In fact, according to a recent poll, 70% of Americans say they would prefer to die at home using hospice. And in recent years, Medicare has allowed the hospice benefit to cover more types of diagnoses, which in turn, has allowed more people to die the way they want. While this is good news, the amount of care received on hospice can still fall short of what most families would consider an ideal end-of-life situation.
That’s where in-home care can help. Bringing in a caregiver can bridge the gap between what is provided by Medicare and what falls on the shoulders of friends and family. But to understand the relationship between in-home care and hospice, it is important to first be aware of how hospice works.
In a nutshell, hospice provides expert medical care, emotional and spiritual support, and pain management for people who have been diagnosed with a life-limiting illness. It is specifically tailored to the patient’s wishes and needs, and the focus is quality of life and compassionate care rather than a cure.
The process begins once a physician refers the patient, after which a hospice team is formed and a care plan is developed. This “team” usually consists of several people including (but not limited to) the patient’s personal physician, a hospice physician or medical director, nurses, social workers, bereavement counselors, a spiritual counselor, and speech, physical, and occupational therapists, if needed.
Members of the team make regular visits to assess the patient and provide care, and they are on-call 24/7 for emergencies. While there are many professionals on the team, they are typically caring for many patients at once, and there are some distinctions between phases of care that limit their time spent with any particular patient.
Hospice guidelines (according to Medicare) outline four levels of care (via NHPCO):
- Routine Hospice Care (RHC) is the most common level of hospice care. With this type of care, an individual has elected to receive hospice care at their residence.
- Continuous Home Care (CHC) is care provided for between 8 and 24 hours a day to manage pain and other acute medical symptoms. CHC services must be predominately nursing care, supplemented with caregiver and hospice aide services and are intended to maintain the terminally ill patient at home during a pain or symptom crisis.
- Inpatient Respite Care (IRC) is available to provide temporary relief to the patient’s primary caregiver. Respite care can be provided in a hospital, hospice facility, or a long-term care facility that has sufficient 24-hour nursing personnel present.
- General Inpatient Care (GIP) is provided for pain control or other acute symptom management that cannot feasibly be provided in any other setting. GIP begins when other efforts to manage symptoms are not sufficient. GIP can be provided in a Medicare-certified hospital, hospice inpatient facility, or nursing facility that has a registered nursing available 24 hours a day to provide direct patient care.
More than 98% of patients don’t move past the first level of care (routine), and most of this care takes place where the patient lives, with 76% occurring at the home or at an assisted living facility with little to no additional nursing support. Because most care never reaches the level of round-the-clock support, the amount of care you receive from hospice professionals can be much more limited than you would think. A recent Kaiser Health News article explains:
“According to Medicare, hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.”
This puts most of the burden of care on the patient’s friends and family. In that same article, the author interviewed caregiver advocate and writer Joy Johnston, who went through the hospice process with her mother: “Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She said that during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.”
Enter in-home care.
How in-home care works with hospice
Caregivers can assist the hospice team in a variety of ways, but the end goal is the same – the best quality of life possible at the end of life and support for you as the family caregiver. At Sequoia Senior Solutions, we have relationships with several hospice organizations in the area, ensuring a coordinated effort and a smooth process for all involved. We perform a complimentary and personalized needs assessment, during which special care is taken to assign a caregiver who has the experience to meet the needs of your loved one. This allows for greater consistency for the client and their loved ones during this crucial period.
Hospice is one of our eight specialty programs, and many of our caregivers are trained to understand the unique needs of hospice patients, including:
- The relationship between hospice and palliative care, the signs of symptoms of end of life and clinical death, and how to care for the body postmortem
- Work as a team and communicate effectively with medical staff and family to meet the client’s physical, emotional, and spiritual needs
- How to address common challenges with end of life, such as preventing pressure ulcers and managing changes in eating, drinking, immobility, sleeping, breathing, and elimination
- The Kubler-Ross grief cycle and George Engel’s biophysical approach to help clients and their loved ones navigate the end-of-life stage
- How to talk with clients and their families about the dying process and final wishes, including the spiritual component and advance directives
A caregiver can provide a much-needed break for family members, and because they are specially trained, you can have peace of mind that they will keep your loved one as comfortable as possible.
Incorporating in-home care into a hospice plan can be the missing piece that helps your loved one pass away according to their wishes, but without added stress and pressure on you as the family caregiver. If you would like to learn more about our Hospice Specialty Program and see if we might be a fit for your situation, please reach out using this form to schedule a complimentary discovery call. A client service specialist will be happy to assist you in this time of need.
- Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families – Kaiser Health News
- Facts and Figures – National Hospice and Palliative Care Organization