When I was in my mid-20s, I was a nurse in a service offering Hospice care to many of our patients. That experience left me with a life-long appreciation for the patient-focused, family-centered, personalized and attentive care that is possible at the end of life.
My connection to Hospice got even more personal last week as both my Father (95) and Mother (93) became Hospice patients.
My family is in a time of introspection, caring, and questions. I thought I would address our concerns here to satisfy my parents, my three siblings, myself, and ultimately any of you facing a similar situation.
The Why of Hospice
There are many misunderstandings about Hospice- and that is unfortunate. Unfortunate because Hospice offers an approach and resources that could benefit so many more people than it currently does.
We are all aware of -and celebrate- the enormous advances in medical treatment options for people with severe illness and/or injuries; we celebrate victories over what were once terminal conditions. But medical science has its limits- death will not always be delayed.
Is aggressive treatment the best way to transition towards what will be, inevitably, a death? More importantly, in each case when treatment is bordering on futile is that the patient’s decision– or is their choice muted by age, weakness, resignation, or incompetence?
When what matters is not the length of life but the quality of the living that is left- hospice may be the answer.
What Makes Hospice Unlike Traditional Medical Care?
Hospice offers a different way to die- in your own home or in a designated hospice facility (and in some cases in a nursing home or hospital). Hospice is not a place- it is an ideology.
Traditional treatment is cure-oriented. Interventions, surgeries, medications, therapies- all of these are either to eradicate disease; fix an organ or bodily function or broken part, or at least modify the implications of any of the above. Of course, any treatment regime must also consider pain and discomfort or obstacles to daily living- but the trajectory of treatment is toward making things better.
In contrast, Hospice focuses on comfort: physical, emotional, psychological and spiritual welfare. Treatment for a cure is stopped* and attention on wellbeing is paramount.
[*Treatment for other problems a patient may have can continue; treatment for the terminal condition will not.
Who is Eligible for Hospice Care?
As we are all too aware, death is not exclusive to the elderly. When younger adults or children are dying, they can turn to their private insurance company and/or state and local payment programs to discover available hospice treatments and coverage.
But most people requesting Hospice care will be over the age of 65, and therefore, Medicare beneficiaries.
Medicare eligibility for the Hospice Benefit requires that your regular doctor* and the hospice medical director both certify that you have a life expectancy of 6 months or less, should your illness or condition run its “normal course.”
That certification must be repeated by a hospice physician again in 90 days, and then every 60 days for as long as you live.
[*Involvement of your physician (if you have one) is only necessary at intake but entering hospice does not mean you must abandon your physician– their continuing involvement in your care is at your discretion and between you, your physician, and your Hospice team.]
Is Hospice Limited to Cancer?
Heavens no. The history of Hospice in our country springs from Cancer care, but cancer is not a requirement for eligibility- in fact, only a minority of Hospice patients (only 31.1% in 2008) have Cancer.
Since 2006 the most common diagnosis for Hospice admission is non-Alzheimer’s dementia; in recent years there has also been an increase of patients with neurologic-based diagnoses, and non-specific conditions such as “Adult Failure to Thrive.” (For more)
What is critical to eligibility is the patient’s life-expectancy, not the medical condition that is causing them to die.
What Is A Family’s Role in Hospice?
As with all medical treatment, if a patient is competent, they decide to enter Hospice as the last phase of their life. If the patient is not competent, the decision rests with their legally recognized representative (subject to state law).
But regardless of legalities- hopefully, the decision to enter Hospice comes with full support of the patient’s family. That will surely be better for the patient- but the family will benefit from Hospice as well.
Hospice is a family-centered concept of care. Not because the family will be required to provide the physical, intimate care of their loved one (another misperception about Hospice) but because the family and patient will want to make plans together whenever possible.
At the end (as well as along the way), a Hospice team can support the grieving family as they say goodbye and ultimately lose their loved one to death. The family’s well-being is core to the Hospice mission.
As described by the American Hospice Foundation:
The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death.
What Does Medicare Cover?
Meeting the physical, emotional, psychological and spiritual needs of a Hospice patient and their family requires a multi-disciplinary team. Depending on the plan of care determined by the Hospice provider, patient & family, that team could consist of (but is not limited to):
- Doctors
- Nurses & Nurse Practitioners
- Home Health Aides
- Counselors & Social Workers
- Pharmacists
- Physical and/or Occupational Therapists
- Volunteers
Perhaps most importantly to those at home, Hospice includes 24/7 availability of nurses and doctors to provide the patient and family with the support and care they need.
The Medicare Hospice Benefit covers virtually all expenses related to care received, whether that care occurs in the patient’s home or in a Hospice facility (and with some limitations in a nursing home or hospital).
Is Hospice for Everyone?
Not all people want to relax into death; there are plenty among us who want to fight until the end. If that characterizes you or your loved one I want to remind you that Hospice is a choice.
My concern is that people who would appreciate the approach of Hospice either do not know enough about it or have been scared off by persistent myths that make this critical decision more difficult.
If those of you who might be interested in pursuing this path find out more now and add this option to your end-of-life planning (and feel that you can better encourage your loved-ones to consider Hospice as their own choice)- I am gratified.
But my greatest hope is that my family is assured that Mom and Dad are entering the last phase of their life- but not the worst.
Want to Know More?
What is “Palliative Care?”
The difference between “Palliative Care” and “Hospice” causes a lot of confusion. Care that focuses on comfort and function is called “Palliative Care,” and as such a person on Hospice will receive this type of attention. There is, however, an entire specialty in medicine known as “Palliative Care” which is not restricted to terminally patients.
Palliative care is often an addition to a traditional medical team of specialists all working to help a patient toward a cure or the best possible outcome of treatment. Palliative Care is part of a treatment plan- Hospice is the plan for moving a patient toward dying with optimal comfort. For a short [1:34] film on the difference go here.
The History of Hospice (and the law regarding Physician-Assisted suicide and other topics related to end-of-life care) is reviewed in meticulous detail here.