We all want to believe that in home hospice care is the best for our loved one’s last days with us and I agree, to some extent. However, I believe there are situations in which in home hospice may be less desirable.
We are told that most people would prefer to die at home in a familiar environment surrounded by loved ones, not in an impersonal environment like a hospital or nursing home. Having the ability to control of how things will happen including various spiritual and/or cultural needs that simply are not allowed in some hospital or nursing facility settings. But sometimes, as difficult as it may be to admit, those environments may provide better care for our loved ones, but do we really have a choice.
In Home Hospice care will usually provide equipment such as wheelchair, hospital bed, or diapers – various equipment that is needed. The Comfort Care package of prescriptions show up at the house through one of the mailing systems. But the physical presence is scarce.
The in-person assistance is limited. The hospice care team have several patients and their time is limited with each patient. There is comfort in the knowledge that there is a 24-hour hotline to consult a qualified nurse if necessary. But the primary caregiving falls on untrained, inexperienced family member(s).
The physical needs alone can be overwhelming. It is not easy to change a soiled diaper on an adult with little or no mobility without training. It’s not easy to give someone required pain medication when they can no longer swallow. The need to change their position for comfort is unknown to the “regular” person. These are just a few demands necessary to care for your loved one.
All of which are difficult enough for an average person, but what of one that is smaller than the patient. What of the elderly who no longer has the physical strength and may be battling their own ailments. There are physical needs that are required that we are not trained for and cannot adequately provide for the patient. This causes stress on us that can transfer to our loved one, unintentionally.
Hospice care is obviously emotionally draining too, that’s a given. But it is intensified by the physical demands. The impact of these growing demands can result in stress, anger, guilt, fatigue, depression and physical symptoms.
Not only can these emotions cause problems for the caregiver they can be transferred, unintentionally to their loved one. An example of this transference is when there has been an occasion in which our loved one has been upset, angry, happy or many other emotions. Even though the are unable to verbalize how they are feeling, we know. We may not know why, but we can sense their uneasiness. This sensing ability goes both ways. They may not be able to verbalize their knowing of this, but they can sense it, just as we can.
Caregiver Syndrome is something everyone should be aware of. Read more here;
http://www.familycaregiversbc.ca/wp-content/uploads/2012/12/Caregiver-Syndrome.pdf
I was surprised to find that the qualifications for one to receive in home hospice is less than “Inpatient” or “Hospice Facility” qualifications. To qualify for in home hospice, the patient has been diagnosed with a terminal illness and given six months or less to live with the intention to seek palliative (comfort) care instead of curative care.
To qualify for “In patient” or “Hospice Facility” care the patient’s condition is considered terminal and the patients condition requires intensive medical attention that cannot be provided at home or in a nursing home facility.
Such as:
- Uncontrollable nausea, vomiting, pain and seizures
- Bone breakage and fractures caused by an underlying disease
- Severe, unmanageable respiratory distress
- Symptom relief provided by IV medications that need close monitoring
- Spinal cord injuries accompanied by paralysis
- Wound treatment and complex wound dressing that can’t be managed at home
- Unmanageable agitation and delirium or anxiety that is acute and severe
Most patients receiving hospice care do not require the level of attention required for inpatient services, and therefore, receive their end-of-life care at home with family members around them. The qualifications listed are based on Medicare-coverage. I’m unsure what the qualifications are for private insurance companies, but they do model their coverage from Medicare-coverage.
What of those who live alone? Is it expected of family members to care for them in the patient’s home or to move them their home. Both of these scenarios bring up many more questions of care.
I do believe most hospice care givers are genuinely caring and compassionate people who truly help the
patient and their families. I admire their dedication for all that they do, but it is still the duty of the family and/or friends to be the primary caregivers and I question as to whether or not this is the best we can give to our loved ones.
Do we really choose in home hospice or have we been convinced this is what we want, this is what is
best.
Best Wishes
