For many seniors and their families, there comes a time when a doctor uses the term "hospice care" or "palliative care." These are both very serious terms and ones that come with a great deal of weight, a lot of stigma, and some confusion. While this care is quite common, many people do not know the difference between hospice and palliative and use these terms interchangeably. However, these two terms have very different meanings.
Hospice care is a very specific type of care, and while palliative care is similar to hospice, it is not the same. The ultimate goal for both palliative care and hospice to is to help provide the best quality of life possible for the patient. The similarities and the differences between hospice and palliative care can go a long way in helping any senior and their family better understand these serious care plans should they arise.
Hospice Care Defined
The first and most important piece of information to learn about hospice care is that this is not a term used to describe a place, it is a phrase used to describe a type of care. The word hospice comes from the word "hospitality" and it is rooted in the idea that death is a natural part of life and that individuals who are facing death should be able to pass on in a safe and comfortable environment with dignity.
When a doctor, caregiver or nursing home decides to place an individual on hospice care, they are changing their care philosophy to ensure that the patient has the physical, spiritual and emotional support they need during this difficult time. The Hospice Team helps guide family members on ways to best support their loved one during the hospice period.
Typically, individuals who are terminally ill and who are likely to pass away within six months are the individuals who are placed on hospice care. A six-month prognosis is usually all that is needed from insurance for an individual to qualify for hospice care. This type of care can be given at all different types of locations, with many individuals choosing to receive hospice care in the comfort of their own homes or in the home of a close family member. Other types of hospice include inpatient hospice, hospice while in an assisted living facility and nursing home hospice.
Palliative Care Defined
Palliative care, like hospice care, is a specific type of care, not necessarily care in a specific place, like nursing home care. The primary focus of palliative care is to provide individuals with relief from the symptoms they are experiencing while facing a serious illness. While this does mark end-of-life care for some individuals, it is not necessarily end of life care. Patients can start palliative care at any point during their illness, and people can come off palliative care if their condition improves.
Typically, there is an entire team standing behind a patient receiving palliative care. This team often includes doctors, social workers, therapists, specialists and nurses. They will focus on relieving pain and helping with other coordinating issues such as fatigue, shortness of breath, nausea, trouble sleeping and even loss of appetite. Some patients simply receive this type of care to manage their symptoms while they let the illness take its course. Others will receive palliative care while pursuing other treatments that are attempting to cure the illness involved.
Many seniors today will start receiving palliative care after a serious illness diagnosis. This can be an illness such as Alzheimer's, kidney disease, congestive heart failure, Parkinson's, cancer or other similar serious and life-threatening illnesses. Just because a senior has one of these illnesses and decides to start palliative care, it does not mean they are going to pass away any time soon.
Differences Between Hospice and Palliative Care
Palliative care focuses on managing pain and relieving stress and symptoms associated with a major illness or disease. Often called "comfort care", the goal is to improve quality of life for the patient and their family. Palliative care is provided at any stage of an illness, including with curative treatments.
Hospice care is typically limited to individuals who have six months or less to live. Palliative care can start at any time, including right at diagnosis. While palliative care can be administered by a hospice organization there are some other major differences.
With palliative care you can also receive curative treatments in an attempt to cure the illness at hand, while hospice treatments are aimed solely at relieving symptoms. The average life expectancy for someone in hospice care is a matter of months, while it can be a matter of years for someone in palliative care.
Care Plan for Hospice and Palliative Care
Once palliative or hospice care is needed, typically there are several components to an overall care plan including:
- Coordinating an overall care plan
- Managing pain and other symptoms
- Assistance with daily care such as eating, bathing and dressing
- Access to any needed medical treatments and supplies
- Professional counseling for the patient and their family members
- Caregiving assistance or respite care from the primary care providers
Hospice requires four areas of service such as: routine home care, continuous nursing care at home, respite care and facility in-patient care. These include physician and social worker participation, counseling, medications, health aides, medical supplies and equipment, labs or other diagnostic tests, therapy and other assistance.
Ultimately, both types of care focus on helping patients relieve their symptoms while providing these patients and their family with support during a major illness and/or end-of-life transition.
Eligibility for Palliative Care vs. Hospice Care
Hospice eligibility requires that at least two licensed medical doctors certify that the patient has less than six months to live if the disease follows a typical course. Palliative care is less stringent and can begin at the discretion of the doctor and patient at any stage of illness, terminal or not.
Palliative or Hospice Care Are Common for These Illnesses
These types of care are commonly offered during advanced, serious illness or diseases, including:
- Heart disease
- Lung disease
- Kidney failure
- HIV or AIDS
During a palliative or hospice care plan, people can remain under the care of their regular physician in conjunction with other care and treatments.
Providers of Palliative and Hospice Care
Both Hospice and Palliative care are typically provided by a team of physicians, various nurses, social workers, chaplains, pharmacists and dietitians, depending upon the needs of the patient and family. These professionals address physical, emotional and spiritual pain, symptoms and common difficulties such as a loss of independence and feeling like a burden, and the coping and wellbeing of the family.
Volunteers are a special part of hospice caregiving. Unlike any other short-term or long-term senior care option, a hospice program requires the use of trained volunteers. The Medicare law enacted in the US in 1982 requires that volunteer hours equal at least five percent of the hospice provider's total patient care hours. The idea was that, along with maximizing healthcare resources, volunteers would keep hospice providers community oriented and patient-and-family focused. The idea stuck and today hospice volunteers devote more than 20 million hours annually to patients and their families nationwide.
Where is Care Provided?
Palliative care and hospice can be provided in a variety of settings including hospitals, nursing homes, hospice center or units, assisted living, out-patient clinics and at home. This assures continuity of care in multiple settings over the course of the disease or illness.
When Is It Time to Choose Palliative Care or Hospice Care?
Deciding whether to seek palliative or hospice services can be a difficult time for any family. There is mounting data that suggests that usually hospice is sought too late. Here are some of the situations that may indicate it is time to explore these care options:
- Two or more doctors have indicated that life-expectancy is six months or less (Hospice Care)
- More frequent doctor, hospital, or emergency room visits
- Increase in pain medication
- More time spent in a bed or chair
- Weight loss or weight gain
- Needing more assistance with activities of daily living such as dressing or walking
- Feeling tired, weak or incoherent
- Shortness of breath, even when resting
- Loss of appetite
Typical palliative care scenarios, according to the National Hospice and Palliative Care Organization:
- Patient/family/physician needs help with complex treatment decision making and determination of care goals
- Patient is experiencing physical pain, psychosocial or spiritual suffering or other symptoms
- Prolonged hospital stay without evidence of improvement
- ICU patient with documented poor prognosis
- Withdrawal of life-support in the ICU
- Care of the dying patient and support of the family
- Assistance needed to determine hospice eligibility
What Kind of Patients Choose Palliative Care?
The American Society of Clinical Oncology has identified the characteristics of a person who should receive palliative care but not curative treatment:
- Limited ability to care for self
- No longer benefitting from curative treatments
- Unqualified for an appropriate clinical trial
- Current treatment plan is no longer sufficient
Talking to loved ones and medical professionals about care and goals can help determine whether palliative care or hospice might improve quality of life.
Paying for Palliative Care vs. Hospice Care
Medicare pays all hospice charges for seniors while only some palliative treatments are covered. Medicaid covers all hospice charges in 47 states, while it only covers some palliative care treatments. Most private insurance plans come with hospice benefits, but palliative care is not usually covered.
Although most hospice care is paid for by Medicare, there are many hospices that are charitable, nonprofit organizations which receive charitable donations from other charitable organizations or companies, or from private individuals in the community. These donations are used to provide services for those hospice patients who have no other means of paying.
In situations when costs aren't covered through charities, insurance, Medicare or Medicaid, paying via private funds is an option. Sources of private funds include retirement accounts and 401Ks, savings accounts, annuities, trusts and stock market investments. Social Security can also be a payment solution for those who are seeking hospice or palliative care.
Resources for Learning About Hospice and Palliative Care
- Hospice Foundation Directory
- American Academy of Hospice and Palliative Medicine (AAHPM)
- Hospice and Palliative Nursing Association (HPNA)
- The National Hospice and Palliative Care Organization (NHPCO)
- Medicare Hospice Compare
Whether you or a loved one is told that you may need hospice care or palliative care, it is important to understand what each of these terms mean and what they entail. While it may feel overwhelming, understanding each form of care can only help families make rational and well-informed decisions during this difficult time.
Schedule a meeting with the Hospice or Palliative Care team or provider. They will provide you with information, resources and answer questions. More information can be explored on the National Hospice and Palliative Care Organization website.