Palliative Care, Hospice, and MS
Palliative Care does not leap out as something associated with MS. Yet in reality ‘palliative care’ is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms, and stress of serious illness.
A brochure is available from National Multiple Sclerosis Society entitled “Talking about Palliative Care, Hospice and Dying.” Since my own Stage 4 lung cancer diagnosis this past May I’ve read it again to help me understand the terminology of medical care versus the stigmas of labels.
“End Stage” is a stigma not a diagnosis. End stage is a numerical function not a function of people fighting to live with MS or outlive cancer.
Stigmas work against everyone from MS through Lung Cancer.
Over our quarter century story progression was and is scored by EDSS (Kurtze Expanded Disability Score) a method of ‘quantifying’ disability in multiple sclerosis.
‘Quantifying’ not ‘speculating’! For example – Patti has been hovering around 9 out of 10 (10 = death) for years. The thing is, just as every mild case of MS is unique, so is every case of progressive. There is no timetable with MS….it defies a formula or equation.
Frankly I believe the care facility era has prolonged Patti’s life. As Patti progressed to complete dependence on others for any or all activities of daily living, homecare became isolating … when visiting could involve helping her up from a fall, choking, and bowel and bladder incontinence visitors fade.
Now even labeled “bedridden” and non-ambulatory she continues to thrive IMHO due to lack of stress and injuries from falls, etc and the 24-7 attention of staff. Technically she is receiving palliative care it’s simply labelled “long term care” even though it is all about reducing the stress of her severely progressed MS. Thank God she has never known chronic pain only acute episodes over degenerative joints..
I am told that in some States that an ‘end stage’ label can qualify a person with MS for hospice care. At the risk of oversimplification, hospice basically encompasses palliative care – making hospice care available either in an inpatient facility or at the patient’s home. Obviously when an inpatient facility is an option it can double as a type of respite for family.
Here again unfortunate stigmas confound what ‘quantifying’ need not. For example, a physically smaller caregiver with larger MS spouse simply cannot do home-care after a certain point … if the palliative care programs can help them – by all means they should be utilized, even though the same programs may not be needed with larger, stronger caregiver.
In some States you can be discharged from hospice (like a respite) with the ability to apply again … for some people, the best of possible worlds. Others like us spend down to poverty (easy to do after a quarter century of MS caregiving – you are broke anyway) to qualify for long term care facilities.
Obviously there will come a point when you will need to have conversations one way or another about palliative care, hospice, and dying regardless of what your diagnosis is.
As a caregiver this might be the one surprise you are not prepared for, after all MS is not considered a fatal disease! And your spouse has mild MS or is using disease modifying drugs…. Don’t let yours become intimidated by stigmas or wait too long. Get the facts in your State.
As a caregiver you are no more guaranteed tomorrow than the MS person you care for.
Editor’s note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.
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