Every year in the U.S, hundreds of thousands of people die from terminal illnesses like cancer and advanced heart disease. Unfortunately, the vast majority of this demographic doesn’t enter hospice care until their final days, if they ever do at all. In order to understand why this is so, a cursory glance at what hospice care entails is necessary.
What is hospice care?
Life-limiting, or terminally ill, people in the last stages of their lives require medical, emotional and spiritual care to get them through with dignity and ease until the end. Hospice care provides these forms of support for them. Its focus is on improving quality of life rather than trying to elongate it. Hospice care is also inclusive of the friends and family members of the patient, in that it helps prepare them for their loss.
Hospice care is utilized when it has been determined the patient’s anticipated life expectancy is 6 months or less and curative medical treatment is no longer being pursued. The care team usually consists of a doctor, social worker, spiritual and bereavement counselors, nurse, pharmacist, home caregiver and trained volunteers. Their job is to provide the following benefits and services for the patient:
- Symptom Management: Basic medical care is given with emphasis being made on controlling pain and other symptoms of the disease/condition. This is to ensure that the patient can live his//her last days physically comfortable and free from pain. Hospice care offers comprehensive pain and symptom management.
- Spiritual Guidance: Hospice care is concerned with the spiritual fulfilment of the patient and personal caregiver/family. As people have varying religious and spiritual beliefs, this aspect is fine-tuned to meet the individual needs of the patients.
- Respite Care: Hospice services allow caregivers (friends and family) to take breaks from the 24/7 job of meeting the needs of their loved one with much-needed rest.
- Family Involvement: Hospice care makes certain that the family of the patient is kept abreast of the condition. They’re told what to expect and also provided support in a sensitive way.
- Round-the-clock Care: The hospice care team coordinates care and support for the patient 24 hours a day, 7 days a week. Various hospice models exist to meet patient/caregiver needs.
- Bereavement Care and Counselling: For up to 1 year after the patient has passed, the hospice care team will help the family and friends get through the grieving process. This is done via face-to-face sessions, phone calls and support groups. They may also refer them to other professional services if the team feels it is needed.
Hospice care can be delivered at home, or in a facility
Hospice care can take place either at home (which is usually the preferred option) or in a facility like a hospital, nursing home or hospice facility.
Home-based hospice allows patients to remain with their loved ones in their last days. It involves home visits and a personalized approach from the hospice team. In some instances, certain medical equipment may be required at home.
Conversely, there are situations where adequate and effective hospice care cannot be safely provided at home because of the nature and complexity of the illness. For example, patients with end-stage heart disease whose symptoms (like pain, shortness of breath and fluid retention) cannot be efficiently managed at home will need to receive inpatient hospice care at a facility for maximum comfort and quality of life to be achieved.
People who fall into this category, along with those whose family/friends are not particularly involved in their lives, will have to be cared for in a facility.
Are hospice care and palliative care the same?
Both hospice care and palliative care focus primarily on pain and symptom relief and provide care for people with life-limiting diseases.
However, the major difference between them is that, with palliative care, the employment of curative medical treatment need not have ceased before it can be used. That is, curing the patient could still be on the agenda while he/she is receiving palliative care. On the other hand, with hospice care the opposite is true. Curative treatment must have been abandoned and the emphasis is on living out the rest of one’s days with dignity and comfort. An instance of this would be when a patient who has End Stage Renal Disease (ESRD) decides to stop dialysis - toxins will build up in the system and death within a matter of weeks will become inevitable.
Also, palliative care can begin at any point, even at the diagnosis stage. Case in point, cancer patients can receive palliative care starting from when the diagnosis is made, through to treatment - possible chemotherapy or radiation - and afterwards. While hospice care starts at the end-of-life stage when the patient has approximately less than 6 months to live.
The underutilization of hospice care
A third of patients are referred to hospice care in the last week of their lives, yet only 46% of terminally ill persons end up receiving hospice care for even just a day. Additionally, the average time patients spend using the service is 69.5 days, while the median is 23 days. This means that the vast majority are not able to access its full benefits that are covered for up to 180 days. For a service that’s available for half a year and whose cost is fully covered by Medicare, these figures are dismal. To help create awareness of the benefit, Medicare increased the reimbursement rate for hospice in 2017, the only service to see an increase.
Several misunderstandings play a factor in the underutilization of hospice:
- Eligibility & Benefits: Many patients, their family caregivers, and even physicians are not aware that hospice care is available for patients with diseases other than cancer. They also erroneously believe that it is for patients whose death is very imminent. In reality, it’s a service intended to let persons with incurable illnesses live out the rest of their days in peace and dignity.
- Coverage: The knowledge that hospice care is free and covered by Medicare is not prevalent.
- Delivery Location: Lack of awareness that hospice care doesn’t have to be provided in hospice facilities - it can be had at home.
- Prognosis: Doctors’ uncertainty about prognosis, and the tendency of both doctors and patients to maintain optimism about prognosis.
- Patient Needs: Lack of fluid communication between care team members about the patient’s needs.
- Family Benefits: Hospice is a benefit for the family members as much as it is for the individual Medicare patient given its bereavement counseling and respite care services (to offer relief for family caregivers very active in the care of their love one)
DINA™ as a solution
Our digital nursing assistant, DINA™, is trained with a blend of predictive models and machine learning techniques to help overcome many of these issues. DINA™ continuously monitors patient data within enTouch™, the digital post-acute network from PreparedHealth, to identify patients who would have otherwise been missed. Once identified, DINA™ also recommends the appropriate hospice or palliative care partner and notifies the specific caregiver that should intervene in real-time. With DINA™ activated, organizations improve their performance and drive timely, evidence-based interventions and care transitions.