When physicians recommend hospice to their patients, they are doing so based on review of the patient’s diagnosis/prognosis and often supported by lab and/or test results which recognize when medical interventions are no longer helpful. Because physician’s recognize medicine’s inability to cure this patient population, a referral to a hospice is a way to provide further support of their patient. Hospice teams are specially trained in end-of-life care following the guidelines set by Medicare for end stage diseases no longer responding to treatment or those diagnosed too late for treatment options.
But beyond the regulations and medical guidelines, what makes a person appropriate for hospice has much to do about the patient’s mindset…about being ready. Ready to embrace the hospice philosophy foregoing aggressive treatments and following comfort measures. Ready to stop the constant revisits to the hospital emergency room. Ready for life to play out as intended.
A phrase often heard by our education team is “I’m sorry, but we’re not ready for hospice yet.” As team members who know that a patient is “medically ready” for hospice, it is difficult to see resistance towards what could be extremely beneficial for the patient and those caring for them. This is especially true when the resistance is based on a preconceived notion that hospice is only meant for when one is ready to die.
Reality is we are all going to die one day. Just as each of us is born, we will die…but it is the life in between those two points that is so important.
It cannot be stressed enough that hospice care is a unique level of care for those facing a life-limiting illness that want to focus on comfort measures as they LIVE their remaining life. It is worth repeating…as they LIVE their remaining LIFE - not hours, but ideally months if not even years, prior to a natural death occurring.
But for too many people, the word hospice immediately conjures up thoughts of death and dying. They imagine people being stripped of their medications and being forced to take morphine. They think that it means they are giving up on their life or that of their loved one. But, with a program that has clearly interpreted the Medicare Hospice guidelines, these assumed scenarios are not what plays out when under their care.
Due to the many misconceptions of hospice it is important to know a good hospice program will:
1. Give the patient time to talk with hospice personnel prior to signing on to have them provide care. Attention should be given to the patient and the questions they have, not on insurance and/or payment.
2. Focus on the patient’s quality of life and encourage enjoyable activities that match the patient’s physical abilities. This obviously varies from patient to patient based on where they are in their disease process. It may mean getting out to the ballpark, taking a vacation, or simply a trip into the backyard on a beautiful day. The key point is that they need not be homebound, let alone bedbound.
3. Never give up hope. Hospice teams are strictly going on the recommendation of the patient’s physician, how the patient’s condition matches up to the Medicare hospice disease criteria, and medical records. However, a person’s condition may improve which then changes the patient’s prognosis which may warrant a discharge from hospice services.
4. Educate, educate, educate – education is key so that patients are understanding the processes and making informed decisions in their care. Until one requires this level of care, they are most likely unaware of what they are entitled to and therefore are basing decisions on what they have heard whether it is correct information or not. In addition, as the patient receives care, education continues so that a level of comprehension is achieved regarding treatment, abilities and expectations.
5. Never force end of life medication protocols – especially those that keep the patients somnolent and unable to engage in conversation or activities with their family and friends. Yes, the assumed most common drug in hospice - morphine, is often used in hospice and can be very appropriate for pain control and shortness of breath, however every patient’s needs vary – some may need a lot, some may need a little, and some may not need any.
6. Show respect of the patient and their caregivers including their beliefs, their wishes, and their choices. The center of focus should always be on the patient and what is best for them.
Education on hospice services prior to needing intervention can be key. Hospice should not be feared but viewed as an option in end-of-life care when successful treatment or cure is not probable. It is about living each day to the best of their ability supported by a team who will address physical, emotional, and spiritual concerns with the patient’s best interest as the primary focus.
About Advanced Hospice Advanced Hospice is a local, family-owned, hospice and palliative care provider located in Western PA, servicing Allegheny, Beaver, Butler, Lawrence, and Washington Counties.
To learn more about Advanced Hospice, visit www.advancedhospicepa.com or