"I AM"- are the two most powerful words in the dictionary because the ending determines your destiny....so join me in my fight against PD to make sure that everyone who suffers from this chronic progressive degenerative disease can develop the courage to shout to the wind- I AM Fierce and Courageous ....
End of life choices in Parkinson’s : bridging the disparity across cultures : by Dr. De León
No where is being able to navigate living with a chronic progressive neurological disease more Important than in the ethnic communities. We as Latinos are far behind in not only getting prompt diagnosis and correct treatment due to financial, linguistic and cultural barriers but even when there is appropriate care, nearing the end of life can be one more hurdle for which many are ill prepared especially in deciding if and when a loved one can be placed in hospice.
Understanding the challenges of various ethnic and racial background could help us increase and improve the care of our loved ones when the end is near without leaving us emotionally, physically and financially bankrupt.
Among minorities there is still a lack of trust in traditional medicine. For some it dates back to studies like the Tuskegee syphilis study and the polio study in which minorities were infected with syphilis and polio concomitantly and allowed to progress without treatment even when penicillin treatment was made available to rest of world.
Among some of the concern Hispanics have in placing there loved ones in hospice ( a place for palliative care to ease pain and suffering in last days) is the fear that a loved ones spiritual needs will not be met. This could be quite distressing for instance if someone believes that they must be allowed to have a last confession before dying otherwise risk the possibility of eternal damnation. One of the things my grandmother enjoyed most while she lived her last months under the care of hospice was the weekly visit by a spiritual leader.
Another problem is that minorities like Hispanics typically like to make decisions in a more general manner in which everyone’s voice is heard as supposed to having a single person being the one making all end of life decisions for family and patient. Although, this is still a family preference we must understand the various culture barriers in order to provide optimal care. Getting a social worker involved helps to facilitate the interaction between the providers and the patients and family needs and wishes.
But, then there is also the stigma and guilt placed by society and culture particularly within the Hispanic communities of not taking care of loved one at home …we as Hispanics don’t put our elderly in nursing homes …doing so may indicate a sign of weakness as well a lack of love and respect. Traditionally, this type of behavior is frowned upon and can cause major psychological distress for caregivers and patients as well (for loved ones may be a feeling of abandonment accelerating depression, anxiety, and fueling resentment).
In order, to aid in finding the best care for end of life choices is first eliminating the guilt out of the equation by asking family to think of loved ones best interest and wishes. This means beginning the discussion early on in disease diagnosis with family and patient alike while the patient is still able to make informed consent and express his or her wishes. Once again, availing of the services of a social worker, counselor or spiritual leader can help ease the discussion process.
The other important thing is to discuss exactly what is meant by hospice and the expectations of all involved. For instance, depending on agency and to some degree the insurance provider patients may only be admitted if have terminal illness that will cease within a week, others a few months while some even provided care for years. Secondly, just as the requirements change from facility to facility for admission so do the locations where services can be provided such as hospital, nursing home, or home. My grandmother had hospice care at my home for the last 6 months which made it more comfortable for her, eliminated any guilt of placing grandma under hospice care, yet provided the medical support and palliative care she needed. In e she had he added benefit that I could tend to any immediate life threading infections and such while this may not be the case for some hospice facilities or agencies which only focus on pain and feeding. Others even allow patients to still visit their providers or vice versa allow physicians to visit them at home or at nursing home.
Finally, when determining who and where to use as end of life provider research to see if the staff are acquainted with a patients cultural needs. My family and I were lucky to find a hospice nurse which was Spanish speaking which made the care much more comfortable and eliminated my concerns regarding my grandmas ability to communicate any discomforts or problems to staff in my absence.
In the end making the tough choices of caring for a loved one until the very end depends and starts with an open communication between all parties involved patient, family and health are provider(s). Typically, I would schedule a separate office visit to discuss these issues specifically making sure we all had a clear goal in mind followed by contacting appropriate services to carry out patients and family wishes.
Discuss the wishes for end of life care through out the disease progression to ensure that the patients wishes are being carried out. Plus, by starting the conversation early you can avoid some of the heartache and guilt that usually comes about as our loved ones are nearing the end of their lives.
Remember end of life choices should NOT be made at the end of our life….