Thursday, May 8, 2014

Hospice and End of Life Care: Palliative Measures and Caregiver Assistance



The saying goes there are only two things certain in life: death, and taxes. When death becomes a certainty that’s when hospice care and end of life care options come into play for patients, caregivers and loved ones.At MedTrainer, we can offer information that will help health care workers to help their patients and loved ones make the best decisions for them. And explain the available treatment options.

Hospices provide palliative care - a way to given comfort. Palliative care can also be offered to supplement more traditional care combining medications and symptom relief in a hospital setting.



While both hospice care and palliative care programs have a different approach in regard to their location and timing, as well as a patient’s eligibility to receive this type of care, the dynamics of both hospice and palliative care are very similar: to provide comfort for patients and their loved ones .

Hospice programs greatly outnumber palliative care programs. Enrollment in a hospice care program is usually made by referral from a primary care physician. The care is usually administered in the home but overseen by professional hospice workers. The patient’s loved one is usually relied upon as a caregiver along with a hospice nurse who visits regularly.



Palliative care teams consist of a patient’s doctors, nurses, and other medical caregivers, usually employed at the facility where a patient receives treatment. While it could be administered in the home, it is usually offered in a hospital, nursing home, or an extended care facility.

The programs differ in terms of timing and approach.   To be entered into a hospice program, one is usually considered terminal - within six months of passing. There are no time restrictions for palliative care. Insurance payment should be examined as coverage can vary. Many hospice programs are covered under Medicare.

With palliative care, that is usually covered by standard medical insurance, and billed separately from other regular treatments.

And what about the treatment itself, how does that vary? Well, hospice programs usually focus on comfort rather than disease treatment. The idea is not to attempt an extension of life but to allow patients to receive the most they can out of the time they have, to concentrate more fully on emotional and practical concerns.

With palliative care, it is essentially an adjunct to disease treatment whether that disease is chronic or terminal. Life extending treatments will continue.

The point is that when reaching the final stages of many terminal illnesses, relief of pain, and relief of emotional stress becomes key.


Understanding late-stage needs, coping with loss and grief, and care and placement options should all be discussed at this time.

In short,  making the patient as comfortable as possible is the goal of care. Whether you are looking at weeks, months, or years, palliative care provides pain control and the relief of adjunct symptoms such as shortness of breath or nausea.

When should palliative care, whether through a hospice situation or not, take place? There’s no specific timing involved. With Alzheimer’s disease, stages in diagnosis may dictate when such treatment should be appropriate. Other illnesses mean different choices, perhaps based on whether a condition has stabilized, current quality of life, and the number of trips to emergency rooms.



Has a patient expressed a desire to stay at home, rather than spend extensive time in a hospital? Has he or she decided against on going disease treatments? Then the time for practical care and assistance may have arrived, particularly if routine activities such as eating and bathing require support from a care giver.

Another important consideration in care is the patient’s comfort and dignity. Whether home or hospital is the location, easing discomfort and allowing connections with loved ones is of the upmost importance at this time.



Of course consideration must also be made of the caregiver's comfort as well. Perhaps what a caregiver really needs is respite care - a break from the intensity of care giving at the end of life. Granting the caregiver a few hours to his or herself can be vital. So can grief support: anticipating a loved one’s death can be in and of itself severely stressful.


Preparing for this final life passage is also of great import, and can be aided with the help of hospice or palliative care. Making decisions about assets, family conflicts, and communicating within a family can be greatly eased with treatments designed to ease circumstances rather than aggressively continue to attack a disease.

In the final stages of life, the demands of 24 hour care at home can become relentless. That is when a family’s needs should be addressed in regard to in-home hospice care or taking the patient to a hospice or other care facility for palliative treatments. While many patients prefer to remain at home with family near by, assessing the possibilities for care and making a considered decision is key to the well being of not just the patient but the caregiver.

Asking for help is never easy, and many family caregivers can feel as if they are letting the  terminally ill patient down if they ask for help. But planning ahead is important, and there is no reason for caregivers to feel inadequate for seeking assistance as necessary. Deciding as to whether a patient should enter a hospice or hospital versus receiving assistance with hospice care at home is just one aspect of end of life care, but an overall decision here affects all others down the line.



Acknowledging time and emotional demands means that a clear decision can be made as to whether or not a family member can in fact be the primary caregiver at this stage. When hospice care is given at home, this is almost always the case, although having a hospice team to work with in regard to patient assessment and personal care needs can be of enormous assistance. Hospice staff members stay on-call 24/7.



Nonetheless, caregivers need to honestly assess if they can handle end of life care for a loved one. How much support is available? Will the home be able to accommodate a hospital bed or wheelchair? What transportation services and medical care assistance are regularly available? A caregiver’s ability to handle the emotional strain of a life-limiting ailment is not to be taken lightly either.

Caregiving, whether with hospice help at home, or through a palliative system in the hospital or other care facility should address issues that often occur during end of life periods. These include sleepiness, lack of responsiveness, confusion, and loss of appetite. Working to alleviate discomfort in these instances include calm speaking to orient a patient, planning activities or visits when a patient is the most alert, and helping the patient to stay hydrated even when appetite fails are all important aspects of care. So too is keepnig the patient company by talking, reading, or simply being there, listening to the patient’s fears or reminiscences.

Another difficult aspect of end of life care giving is the imparting of difficult information such as the expected progression of illness or end of life discomfort that is to be expected. Respecting privacy, a patient’s wishes for care and for funeral arrangements or asset distribution are all a part of this end of life care. And none of it is easy.



Often, we hear about managing pain as the primary end of life care directive when hospice or palliative interventions are what has become the medical treatment. But managing pain doesn’t merely mean the use of pain relieving drugs, but rather soothing conversations, alternative techniques such as meditation or massage, or even fragrance use. Being calm and paying attention to the patient brings comfort and relief that even pain relieving medications cannot.



The choice of hospice care without further medical intervention beyond pain relief, versus palliative care that can include further intervention is a very intimate one that should be discussed with the patient as well as with the caregiver. Decisions are based not only on comfort but on what the patient wants, what end of life directives her or she has established. Whatever those are, they should be respected above all else, but caregivers must also respect their own needs for assistance, and their capability of handling patient care in the home.

All such decisions are a matter of timing, skill, patient needs, and caregiver capabilities. There is no right or wrong answer: every patient, every caregiver, every end of life scenario is as different as the individuals moving through the situation. MedTrainer can provide the kind of informative knowledge that can help medical professionals help their patients and their patient's caregiver to make the best decisions for them.


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