Purple flowerHospice, contrary to a common misconception, is not a place. It is a philosophy of care. When a person with a terminal illness has progressed to a point where curative treatments are no longer effective, or a person experiences an injury from which they will not ultimately survive, hospice care can begin to provide palliative care, which is generally a welcome source of comfort, care and compassion. Hospice care focuses on keeping the patient as pain free as possible, and ensuring their needs are met through the dying process. After what might have been a lengthy period of intense focus on disease or surgeries, hospice steps in and focuses solely on the patient and their minute-to-minute comfort.

Being in the care of hospice means you are focusing on creating the highest quality of life you can for your remaining days, rather than doing further aggressive treatments in order to try to increase the quantity of days in your life. A typical hospice patient has chosen hospice because either there simply are no other treatments to try, or the available treatments are causing more symptoms/pain/inconvenience/trauma than is worth their potential life-prolonging consequences. Most hospice patients have a life expectancy of under 6 months or are otherwise carrying a terminal prognosis.

Tree against skyLocation of hospice care

Hospice care could be provided in an inpatient facility OR out of the patient’s home. Different hospice providers might have different options, but the best scenario is one that provides the patient with the location they prefer. Many people find comfort in remaining in the familiarity of their own home, where others don’t want to have “death memories” made there for the families they leave behind… or any number of other thoughts and opinions regarding the preferred location of hospice care. There is no one right way to feel, or a universal “best” location to desire.

More than meds

Beyond pain medications and other physical aids like oxygen tanks, walkers, etc., hospice also addresses broader needs of the patient. There can be health aides available to assist with tasks of daily living, such as getting a bath, making lunch, or doing laundry. Many hospice programs provide their patients with massages or art, music, spiritual, emotional and social programs, as well.

BranchCaregiver support

Another significant aspect to hospice care is support of the loved ones of the patient. Hospice provides a team of people who can assist the caregivers – from social workers to help with family concerns or conflict, to nurses on call to answer questions. There are programs available to allow caregivers to meet with others in a similar situation, and resources for dealing with grief and even practical matters upon death, such as funeral arrangements.

Hospice does NOT equal “giving up” or “failing”

Hospice care is not ever started because anyone is “giving up.” As wondrous as our bodies are, and as amazing as it is to be alive at all, there is a physical limit to how long these strong (but ultimately fragile) bodies of ours can fight, rebound, heal, survive. No matter whether one has chosen to stop aggressive treatments or ran out of options altogether, deciding to enter hospice should not be considered a failure or defeat on anyone’s part. We are only able to influence our bodies to a certain extent, and the illnesses and injuries that befall it may be outside what we can control. Let’s just point out the obvious – Death is a part of life, and will be experienced by every single one of us. Focusing on the quality of life is a valid decision and should never be judged or seen as weakness or giving up.

Pink flowers Blue skyFeelings you might have

Hospice is a heavy word, with two syllables that say so much between them. When you hear the word for whatever reason in your own life, whether it be about yourself or someone you love, it’s a common reaction to be scared, sad, upset, worried or confused. We encourage you to take a moment to close your eyes, take a deep breath, absolutely cry or cuss if you want to… and then open your eyes and ears and mind to learn more about it and evaluate it honestly and beyond your preconceived notions or gut reactions. Don’t let your fear or concern get in the way of really exploring what it could offer. It may be that this it not the right time for hospice at all. But if it is, there are some wonderful people and resources it can bring into the situation. You might be surprised to find that week 1 with hospice would be much like the week before hospice, just with a bigger support team on board. Ask any questions you have and find the answers and support you need to figure out what’s best, for you.

Action steps

Learn more about hospice:

  • Wikipedia article with the history and philosophy of hospice care
  • Good article on insurance benefits generally provided for hospice (for the most part, hospice is well if not fully covered by insurance, medicaid, medicare). The main site (caringinfo.org) also has a lot of other great info on planning for end of life care, questions, helping a loved one through a terminal illness, etc.

Think about what you would want for yourself if you find yourself qualified for hospice care in the future. Would you want to move to a facility, or stay at home? Become familiar with the concept now, and examine your feelings when thinking about it. Look into the coverage your current insurance provides for hospice.

If you could potentially be a caregiver for someone who might need hospice, see what hospice choices are available in their/your area. The NHPCO site can list hospices by US state/city.