My mother’s Dr. has signed an order for palliative care - up to us whether we want to put the care in place.
My Mom & Dad live in their own home, my brother and/or I are there nearly every day. I know palliative care is only a visit once or twice a month, just wondering if it is helpful or if the disruption to their “routine” wouldn’t be worth it.
Curious about others experiences.
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Palliative Care Improves Quality of Life
Palliative care teams focus on quality of life. They treat people suffering from the symptoms and stress of serious illnesses such as cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and many more.
Relieves Suffering From Symptoms and Stress
The goal of palliative care is to relieve suffering and provide the best possible quality of life for patients and their families.Symptoms may include pain, depression, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping, and anxiety. The team will help you gain the strength to carry on with daily life. In short, palliative care will help improve your quality of life.
And recent studies, including one published in the New England Journal of Medicine, have shown that patients with a serious illness who received palliative care lived longer than those who did not receive this care.
Helps You Match Treatment Options to Your Goals
The palliative care team also spends the time it takes to help you match your treatment choices to your goals. They will also make sure that all of your doctors know and understand what you want. This gives you more control over your care and will improve your quality of life.
Works Together with Your Other Doctors
Palliative care teams are specialists who work together with you, your family and your other doctors. They provide an extra layer of support when you need it most. In addition to treating your symptoms and stress and supporting you and your family, the palliative care team communicates with all of your doctors so that everyone is on the same page. They support you every step of the way.
I have palliative care in place for a cancer diagnosis. The M.D. prescribes antidepressants for me and the social worker asks if I have suicidal thoughts. Then I get an online survey about my mental health. That's about it.
Having a fresh set of eyes coming is good . They will notice differences that you and your brother may miss because you are there so much . This may help avoid some doctor visits or trips to the ER.
It will also get your parents used to help coming into the home . This is good for down the road if you decide to hire help to come in more regularly .
He had to keep his primary doctor, although we used the nurse practitioner for everything and her notes were sent to him(I did have to follow up initially to make sure this happened). She was able to prescribe all medications and did a really nice job of educating him on end of life issues, respecting his wishes all along. My only complaint is that there was no on-call service because of course, everything happens on the weekend.
The best thing I feel she got from the initial visit was being asked what her goals were. No one had ever actually asked this. It gave her some say I felt in her care and motivation. Some of them can write Dr orders, mom's can't but she can ask the doctor to, which in the future could help if mom is not up for going there in person. It can't hurt and if it's too disruptive they can always discontinue...
The assessment was long and that was hard as mom was sick of answering the same questions over and over, first in the hospital by each nurse, doctor and specialist who came in it seemed as well as home nursing, speech and pt!! It got to the point my mother started answering the neuro questions ahead of time it was hilarious. She also gave the date and when they said it was wrong my mom said "well you'd better change the calendar on the wall then" and she was right!
She hasn't had the 2nd visit yet, and we almost didn't even get to that but mom agreed to have another visit end of June.
It can't hurt to see what it's all about for them and let them decide.
You will have, if this is a new MD, a first meeting, and I would encourage you to ready all your questions. If your doctors says that HE or SHE is the palliative care doc and that this is simply a different modality then ask your questions of this doctor.
Sure do wish you the best and hope others here who are currently dealing directly with Palliative care, this new "branch" of medicine, will have more and better answers for you.
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