I don’t want to “give up” or “let my family down”
I hear this quite often from clients who after months of treatment start to wonder if they really want to continue down the same path.
Treatments require the stamina of both the physical body as well as emotional fortitude.
It can be exhausting and when the results hoped for don’t materialize or the times spent in remission become shorter and shorter and treatments become harder and harder, even the toughest “warrior” begins to question how much fight they have left. My mom was in this camp.
That’s why I rarely use the “battle cry” vernacular that is frequently heard when describing a person’s entry into cancer treatment. Another “drafted” soldier in the “war on cancer.” Drafted, because no one joins this army voluntarily.
As much progress as has been made in new therapies, surgical techniques, diagnostic testing, and genomic profiling there are still people who do not experience “victory.”
Are these people quitters? Did they just not “fight” hard or well enough?
Of course not! But they often feel that way and that mantle is hard to put down, precluding many from the benefit of hospice intervention.
The purpose of this post is to offer a different perspective of hospice to highlight why I feel some of the “bravest warriors” choose to lay down their arms and finish strong.
Before we go further, let’s be clear about what hospice is and what palliative care is. They are not the same.
What is Palliative Care? And Who is Eligible?
Cancer is a serious illness that touches all areas of a person’s life as well as the lives of his/her loved ones. People with serious illnesses, like cancer, are eligible for palliative care.
Palliative care treats the emotional, social, practical, and spiritual issues brought on by a cancer diagnosis. It can be administered with or without curative intent.
Some of the physical effects of cancer on the individual include:
- Pain
- Loss of appetite, nausea
- Shortness of breath
- Fatigue
- Depression
- Neuropathy
Some of the ways family and loved ones are affected include:
- Role reversals
- Shifting needs of family members
- Upset of balance of everyday responsibilities
- Financial burdens
Palliative care addresses all of these areas to ensure the person going through treatment remains as healthy and strong as possible.
Who provides palliative care?
Palliative care became a defined specialty in 2006. Although a relatively new specialty, most large hospitals have palliative care teams. The palliative care team is made up of physicians, nurses, dieticians, social workers, psychologists, occupational therapists, and chaplains.
Palliative care may be offered by hospitals, home health agencies, cancer centers, and long-term care facilities, and yes Hospice agencies.
What is Hospice Care? And Who is Eligible?
There is some overlap between hospice care and palliative care. The difference is palliative care services may be provided with or without curative intent.
Hospice care is provided without curative intent and often includes palliative care services.
Examples of situations with non-curative intent would be that there are no longer curative treatment options available or the person undergoing treatment has made the decision to discontinue treatment due to the side effects outweighing the anticipated benefit of the treatment.
What Hospice Is Not
Choosing hospice is not giving up
This is just my opinion, but I feel it takes courage to really think about what your wishes are for the last season of life and then to communicate them with the people most important to you so that when the time comes for hard decisions to be made, you are not “giving up” but actually taking control and executing what you want to happen next.
Many of us hold the theory that if we talk about “death” we will only hasten it. There is no data to support this, however, it is a real fear for many.
I only have anecdotal evidence that the families I work with who have had these hard conversations prior to facing a devastating medical situation and feel much more in control of their situation.
Choosing hospice does not mean you have to leave home.
It is often thought that “going” to hospice means physically going to a place. In some instances, there are hospice units within hospitals or freestanding hospice facilities that provide hospice care if care can not be provided in the home. However, most hospice patients choose to receive care in their homes.
Choosing hospice is not the last resort.
Hospice services can begin when your prognosis is 6 months or less if the disease follows its expected course.
There are times when a person outlives their expected prognosis or a person would like to try a clinical trial that has come available. You can leave hospice to pursue treatment.
Hospice care is not provided by volunteers.
Hospice care professionals are doctors and nurses trained specifically to manage every stage of the end of life. They are also able to help the family recognize what stage of the end-of-life process your loved one is in and how to adjust their care accordingly.
Choosing hospice does not mean your loved one will be sedated with morphine.
Unfortunately, pain is often a part of the dying process. Pain management is just one facet of what hospice professionals provide and doses of pain medications start low and are increased as needed.
The hospice team is made up of a variety of professionals specializing in the physical, emotional, and spiritual care of the patient and their families. Providing services very much like palliative care services.
Choosing Hospice is not expensive.
Hospice care is covered under the Medicare hospice benefit, Medicaid, and most private insurance plans. Patients are not denied hospice care regardless of their ability to pay.
Choosing hospice is not hard to enroll in.
For most hospice programs it only takes a phone call to arrange care and services.
These are just a few of the most common myths that I hear in my consultancy.
It is important to note that the quality of the services provided may vary from program to program.
If you would like to learn more about how hospice may be able to help you or a loved one, or if you wish to speak with someone regarding hospice myths and misconceptions or generally about hospice care, please contact us.