COPD and Palliative Care
In most places outside the United States, hospice usually refers to a building or institution which specializes in palliative care. Such institutions provide end-of-life care, and palliative care to any patients with other specific needs. In the United States, palliative care and hospice care are different treatments.
How does palliative care differ from hospice?
Hospice and palliative care programs share similar goals of providing symptom relief and pain management.Palliative care services can be offered to any patient without restriction to disease or prognosis you can have short term or long term palliative care. It is available to people of all ages with serious, chronic, and life-threatening illnesses.
To qualify for hospice care, two doctors must feel you have 6 months or less to live (every 6 months, your Hospice doctor must feel you still have less than 6 months to live), you must sign a DNR form and you must get all medical care that pertains to the condition you are on hospice for from the hospice team. When it comes to COPD you can be on hospice for years. I was on hospice for almost 4 years before transferring over to palliative care. Even now my prognosis is, I could die any day. According to all my doctors, it is more than likely I'm going to go into pulmonary or cardiac arrest any day now. They've been telling me that same thing for eight years now and I'm still here and still defying the odds. None of us have an expiration date stamped anywhere on our bodies.
Palliative care is actually a relatively new medical specialty, although much like hospice, it doesn't serve only the dying. If you or a loved one has been diagnosed with a serious illness, you may benefit from palliative care. Many of you may not be aware of palliative care, or know what it involves.
Palliative care is a team approach in handling the care of anyone with a chronic illnesses such as cancer, CHF, COPD, Alzheimer’s, Parkinson’s etc. Along with the patient and family, the team includes doctors, nurses, therapists, nutritionists, palliative care specialists, chaplains and others may also be part of the team. Its goal is to provide patients with relief from the symptoms, and the stress of a serious illness, and to improve quality of life for both the patient and the family. You can qualify for palliative care at any age or stage in a serious illness and can be provided along with your current treatment.
The palliative care healthcare team
The palliative care team becomes a partner with the patient, their family and their other doctors. The team spends as much time as necessary supporting the patient and their family every step of the way. They will not only help in controlling your symptoms like: shortness of breath, fatigue, loss of appetite, pain, difficulty sleeping and depression, but also by helping the patient to understand their treatment options/choices and goals. The Palliative care team works together with a patient's other doctors to provide an extra layer of support.
The goals of palliative care
Palliative care offers a broad range of services. The main goals of palliative treatment is relief from suffering, helping the patient gain the strength to carry on with daily life, tolerating medical treatments better, and helping the patient live as actively as possible. Whatever the prognosis, the goal of Palliative care is to improve quality of life for both the patient and the family.
Focusing on the patient
Palliative care is all about the patient. They ask the patient what's important to them and what their major priorities are. Based on what the patients answer, the palliative care team will develop a care plan that meets the patient's goals. For instance; Some patients don't care about the quality of life. They just want to live anyway they can for as long as they can as they're waiting for a miracle. The Palliative care team understands and will do everything in our power to make sure that their choice/goals are respected/adhered to.
Palliative care attends to the challenges that your illness causes in every aspect of life. It also extends support services to include family members and caregivers. They also help to educate family members about the patient's illness, treatment, medications, limitations & what the might except in the future. Palliative care also offer home help with transportation, meals, and shopping.
My personal experience with palliative care
When I was on palliative care I didn't have to leave my house to see my GP or have most of the tests my pulmonologist or cardiologist ordered. Palliative care would have portable machines brought to my house. I had x rays, blood work, echocardiogram, and a ultrasound done at my home in my own bedroom. No chance of picking up any nasty germs at the hospital. I did have to go to the hospital for two tests, a PET CT scan with contrast, and a blood gas test. A GP and nurse came to my house once a month and did a routine checkup. If I needed meds they ordered them & had them delivered. I had to go in the hospital for two days due to CO2 poisoning. When I got out, Palliative care had a nurse come weekly, & an aid come every day to check on me, meal on wheels, a chaplain & a social worker come to make sure I was getting what I required. After two months I told them I no longer needed/wanted all that & my Palliative care went back to the way it was. The only reason I stopped having palliative care is I moved to NC and the area where I live did not offer the service. Sadly, access to palliative care services remains inadequate in the US and are not available in all area.
How does palliative care improve quality of life?
Patients who received early palliative care actually have lower rates of depression, better quality of life, and live longer than patients who received standard treatment only. This may have been due to more effective treatment of depression, better management of symptoms, & less need for hospitalization. And when death draws near, palliative care can transition uninterrupted into hospice care. I went from hospice care to palliative care and at this time I'm on neither, but I can go back on Palliative care when I feel the need to do so. Since it is so hard to predict the ups & downs of COPD, a good thing about palliative care is those of us with COPD can move in and out of palliative care as the need arises. And it is so much better than having a doctor referring you to Hospice and the fear that word evokes in many.
If you are interested in palliative care, (pronounced pal-lee-uh-tiv) ask your doctor if it is available in your area and for a referral to get palliative care services. I would advise anyone that is in the late stages of COPD, particularly those that live alone, to look into getting palliative care services.
Breathe deep & easy.
Editor’s Note: We are extremely saddened to say that on March 2, 2018, Mary Ultes passed away. Mary was an engaged advocate for the COPD community who strived to help people live fulfilling lives. She is deeply missed.
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