How long is the average hospice stay? The simple answer is that, on average, a patient in hospice care for a terminal illness has less than six months to live.
However, the processes and people involved in the decision-making are much more complex.
Every day, many people die in hospitals, assisted living and long-term care facilities, nursing homes, or their own homes, having received care inconsistent with their final wishes.
Most of the time, this is due to not wanting to have a difficult or uncomfortable conversation.
Sometimes, family members think their loved ones know their final wishes, but in reality, they have never talked about it with them.
Or, there is this misconception that talking about hospice and palliative care means giving up hope for a loved one and shortening the time to death.
Another uncomfortable but completely understandable truth is that the person at the end of their life may be ready to transition to death. Still, their loved ones are not ready to do so and wait until their loved one is close to death before deciding to pursue hospice care.
However, waiting until the last possible moment can cause unnecessary pain and suffering.
So, there is incongruency about what one’s final wishes are.
Unfortunately, this lack of communication can lead to undue stress, frustration, family arguments, and confusion when the patient’s needs and wants become incongruent with their caregivers and the healthcare team’s ethical and professional duties and responsibilities.
Hospice care and palliative care are often misunderstood terms.
They are not the same, and both types of care have their respective place in the care decision-making of an individual.
Before we go further, let’s define these terms.
What is palliative care, and who benefits from it?
Palliative care is highly specialized medical, psychological, social, nutritional, and spiritual care provided to people with serious illnesses.
Such illnesses include advanced cancer, end-stage heart disease, kidney failure, chronic obstructive pulmonary disease, dementia, Parkinson’s disease, multiple sclerosis, and many others.
Palliative care patients receive curative treatment for their illness when possible and treatment to help alleviate their symptoms. Usually, this is pain management or treating shortness of breath, as in COPD.
Palliative care can be an excellent way to educate and inform older adults and their loved ones about streamlining and understanding their choices for ongoing medical management of their disabilities, general discomfort, and any of the Geriatric Syndromes they may be experiencing.
The main goal of palliative care is making the patient as comfortable as possible and improving their and their family’s quality of life.
Who is on the palliative care team?
An interprofessional team of healthcare professionals comprising palliative care specialist doctors, nurses, social workers, nutritionists, and chaplains makes up the palliative care team. Some institutions also employ clinical pharmacists trained in palliative care.
How do you start palliative care services?
If your doctor determines that you are a candidate for palliative care, they can refer you to a palliative care specialist, or you can ask your doctor for a referral.
Where can you receive palliative care?
You can receive palliative care anywhere – in hospitals, assisted living and nursing homes, outpatient palliative care clinics, or even at home.
If you are a veteran, you may receive palliative care through the Department of Veterans Affairs.
You can also receive care through Medicare and Medicaid. Your private insurance plan may also cover these services.
Finding a palliative care facility near you can be initiated by visiting the National Hospice and Palliative Care Organization website.
Transitioning from palliative care to hospice care
As I have discussed above, receiving palliative care does not mean preparing for imminent death, even if you receive treatment for end-stage disease – it is intended to improve your quality of life and make you as comfortable as possible.
However, your condition may progress over time. If your doctor determines that current or future medical treatments are no longer helping and that you are likely to pass away within six months, they may transition you to hospice care. Or, you may decide to stop undergoing further treatment and make your wishes known to your doctor and family.
What is hospice care?
As mentioned above, the goal of hospice care is the provision of medical, social, spiritual, comfort, and compassionate care to a patient approaching the end of life.
In other words, in hospice, comfort care is provided similarly to palliative care, but treatment to stop or slow the illness is stopped. Hospice patients understand that they have a terminal illness.
If you are living with a life-limiting illness, it is essential to understand your hospice care options. Talk to your doctor as soon as possible about your end of life care plan – include your loved ones.
Waiting too long may mean you are too close to death to take full advantage of all the comfort measures hospice can provide, which may mean months of comfortable irreplaceable quality time with your loved ones.
What is usually included in hospice care?
Depending on your terminal illness and related conditions, your hospice team will create a plan of care that can include any or all of these services:
- Physician services
- Nursing and medical services
- Durable medical equipment for symptom and pain relief
- Medical supplies (bandages, syringes, injection solutions, IV bags, catheters, etc.)
- Medications to control pain
- Aide and homemaker services
- Physical therapy
- Occupational therapy
- Speech-language pathology services
- Social work services
- Dietary planning and oversight
- Emotional support, spiritual, and grief counseling for you and your family
- Short-term inpatient care for pain and symptom management (must be in a Medicare‑approved facility – hospice facility, hospital, or skilled nursing facility that is contracted with the hospice)
- Inpatient respite care ( temporary care given to you so family caregivers can take a break).
- Any other services to manage your pain and other symptoms related to your terminal illness and related conditions
Who is on the hospice care team, and where can you receive it?
Just like palliative care, hospice can be provided anywhere – a dedicated hospice center, nursing home, long-term care facility, hospital, assisted living facility, or even at home.
Similarly to palliative care, the hospice team comprises specialist doctors, nurses, social workers, trained volunteers, home health aides, and advisors providing spiritual support,
A hospice nurse from the team is always available for support or to respond to changes in the patient’s medical status.
What is the purpose of advance care planning in relation to end-of-life care?
As the term suggests, it is essential to think and discuss your wishes and how you want to be cared for in the closing chapter of your life. This means that you also get to decide which treatments you do not wish to have,
As I mentioned at the beginning of this article, this can be the most challenging and uncomfortable part because it means discussing your final days.
However, you and your loved ones need to recognize that advance care planning puts you in control of your own care, aligning with your wishes, while you still have the capacity to make such decisions.
You can visit PREPARE for Your Care. This amazing free online tool, partially funded by the National Institute on Aging, lets you complete an advance directive and print it out. This resource is available for all states in the United States.
How Long are people in hospice?
This question is a challenge to answer. If you google this question, you will see that people are in hospice for six months or less. However, it is not uncommon to see people being put in hospice, but they get better and are taken out of hospice.
Death is hard to predict – the human spirit can be strong. Or the person declines slowly, needing care longer than six months. It all depends on the individual and the progression of the illness.
In a study by Harris and colleagues, 93.6% of 126,620 patients admitted to ten hospice programs died within six months. In this same study, the authors noted that patients who lived longer than six months were younger than age 65 and were female.
According to a study published in the Journal of the American Medical Association, approximately 50% of patients enrolled in hospice will pass away within three weeks and 35.7% will die within one week.
Other studies have found that 12%-15% of patients survive six months or more.
Medicare has adopted the six-month hospice requirement for providing services.
you qualify for medicare hospice benefit if you are enrolled in Medicare Part A (hospital insurance) and meet all of the following conditions>
- Your hospice doctor and your regular doctor (if you have one) certify that you have a terminal diagnosis (with a life expectancy of 6 months or less)
- You accept palliative care instead of care to cure your illness
- You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions
Medicare pays for all of your hospice care expenses except the following:
- You pay a copayment of up to $5 for each prescription for outpatient drugs for pain and symptom management. If hospice care does not pay for the medication for some rare reason, then your Part D plan may cover it.
- You may pay 5% of the Medicare-approved amount for inpatient respite care
- You may have to pay for room and board if you live in a nursing home or other facility and choose to get hospice care
- Palliative care provides comfort care and curative treatment for illness, whereas hospice is for terminal illness
- Most patients admitted to a hospice program pass away within six months
- Medicare beneficiaries receive hospice services if they are enrolled in Medicare Part A
- A person can live longer than six months and be removed from hospice services because of slow illness progression and be placed back into hospice when their illness progresses