Top 10 Things to Know About Palliative Care
Most of you know how important Palliative Care was during my treatment period. Heaven knows that I had every side effect possible and it was Palliative Care – the branch of medicine that SPECIALIZES in pain and symptom management! – that really carried me (literally) over the finish line.
Recently, the Mayo Clinic published a great article, “Top 10 things palliative care clinicians wished everyone knew about palliative care.” It’s soooooo good and I had to jump on the band wagon as a patient AND clinician who also wishes that people understood these very important aspects of palliative care.
It would be such a Silver Lining if palliative care were a part of every treatment plan from the time of diagnosis because:
- Palliative care addresses the multifaceted aspects of care for patients facing a serious illness.The goal is to improve quality of life (QOL) for patients at any point during their illness, regardless of their treatment plans. Accomplishing this requires an interdisciplinary team of professionals, including physicians, nurses, nurse practitioners, physician assistants, social workers, chaplains, and pharmacists.
- Palliative care is appropriate at any stage of serious illness. Palliative care is often mistakenly equated with end-of-life care, and patients too often resist accepting it during the diagnostic process. Disease modifying interventions may not be an option in late-stage disease. The palliative care focuses on improving QOL through symptom management and support for the patient and the patient’s family, which are tenets that can and should be applied at any point along the trajectory of a serious illness.
- Early integration of palliative care is becoming the new standard of care for patients with advanced cancer. Studies have shown that the older philosophy of introducing palliative care at the later stages of a disease is not as effective as early integration, preferably at the time of initial diagnosis. At this early stage, palliative care visits concentrate on symptom management and awareness of prognosis. In 2012, the American Society of Clinical Oncology (ASCO) recommended that palliative care should be integrated early in the illness for patients with metastatic cancer and/or a high symptom burden.2
- Palliative care is not just for cancer. It is also beneficial for patients with other chronic diseases. Palliative care can be beneficial to patients who bear a heavy symptom burden, such as those with severe chronic obstructive pulmonary disease (COPD), advanced heart failure (HF), pulmonary hypertension, end-stage renal disease, and such neurodegenerative diseases as amyotrophic lateral sclerosis (ALS) and Huntington disease. Critically ill patients in the intensive care unit are also good candidates for the benefits of palliative care.
- Palliative care teams manage total pain.The pain of cancer is well known; it affects 30% to 90% of cancer patients at some time during their illness. Pain is also associated with other serious illnesses. For example, patients with advanced COPD and those with severe HF often have significant pain, as do people with diseases such as ALS and end-stage renal disease. However, pain is still often undertreated. Many patients experience the physical, social, psychological, and spiritual suffering that defines total pain. These patients would benefit greatly from the multidisciplinary approach and expertise in pain management that palliative care clinicians provide.
- Patients with a serious illness have many symptoms that palliative care teams can address.A number of symptoms other than pain affect many patients with chronic and severe illness. Nausea, delirium, fatigue, dyspnea, and other distressing symptoms affect patients and their families. The palliative care team can help identify and address these troubling symptoms, as well as ameliorate their effect on caregivers.
- Palliative care can address the emotional impact of serious illness on patients and their families. In the depressed terminally ill patient, palliative care teams can help make the distinction between preparatory grief and clinical depression thus enabling earlier treatment of depression. The aggressive symptom management, psychological, and spiritual support from palliative care clinicians can improve the depressed patient’s mood. According to the Mayo Clinic authors, “It is this combination of meticulous attention to both psychosocial distress and physical symptoms that is at the heart of palliative care.”1
- Palliative care teams assist in complex communication interactions. All health care practitioners strive to use empathetic communication skills. This can be demonstrated to the patient and family in many ways, both verbally and nonverbally. Patients and their families respond well to these expressions of caring and support. Palliative care practitioners can collaborate with the clinician and help reinforce this philosophy.
- Clinicians should address the barriers to palliative care involvement. Patients’ hopes and values equate to more than a cure. Many people are not familiar with the role of palliative care, thinking that a patient is not ready for palliative care. Even many physicians continue to equate palliative care with hospice care. The palliative care team can promote understanding, which in turn helps patients and families make difficult decisions about the degree of care desired.
- Palliative care enhances health care value. The involvement of palliative care is associated with significant reductions in the costs of pharmacy, laboratory, and ICU services. The palliative care team can improve a patient’s quality of life and mood, as well as enhance the satisfaction of both patient and family. As the number of Americans living with serious and life-threatening illnesses continues to increase, palliative care will play an increasingly significant role in providing higher quality health care at a lower cost.
REFERENCES
- 1. Strand JJ, Kamdar MM, Carey EC. Top 10 things palliative care clinicians wished everyone knew about palliative care. Mayo Clin Proc. 2013;88(8):859-865.
- 2. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880-887.
I was working three jobs while I still had 2 children living at home, when I started having upper abdominal pain, vomiting without any warning and losing 7-10lbs a week. Seeing my PCP every Thursday after work, she kept telling me that my abdomen hurt because I pulled a muscle while vomiting. I went from a size 12 to a size 3 that was so lose that I had to wear a belt to hold my pants up.
After losing one job after another until I had none from calling out sick so often and at the last minute, I was now living alone… so one Memorial Day, I decided to go for a walk to hopefully feel better. While out, I had a heart attack. I am now in the emergency room and after 6 hours of being closely watched, the Doctor came over to me and said "there is nothing wrong with your heart, but we are going to keep you overnight for observation." As the nurse wheeled me into the observation room, I began to feel sick again. I closed my eyes. When that happened, I was no longer in the hospital, I was in a gray tunnel and I said "where am I?" Just as I said that my body began to float and the colors were changing to beautiful colors that were getting lighter and lighter. My body seemed to be "stretched out" as if it were tearing into two (very hard to describe.) There was a light at my head that was very bright and as I got to it, I heard a whoosh sound and I was back in the hospital bed. A nurse came running into the room and was frantically talking to the original nurse, The original nurse said "she did?" Doctor came from everywhere! I had gone into arrhythmia and flat lined for a few seconds. I was taken to the heart unit where they wanted to implant a defib/pacemaker. I wanted to leave AMA, but was told that the police would be called and I would be handcuffed to the bed. I allowed them to do it.
Someone had come in and told me that they had to do a CT of my abdomen because of my blood work. They found a tumor the size of a walnut. After my levels came down a Whippal Procedure was performed. It was malignant and had spread to my spleen which was removed. I kept saying "I have to go home and pay my bills", I was always told the same thing "You are not going home." I would ask "where am I going?" same answer, "don't worry about it". I realized that they never expected me to live very long. I talked to God and stayed positive. I always wanted to be a grandmother and my youngest daughter was pregnant!
Here I am six years later and have five grandchildren. My children act differently towards me. I have 3 daughters and one son. One of my daughters will not come and see me, she will not return my calls…NOTHING, but when I see her at a family affair, she talks to me and kisses me hello and goodbye. My son become very angry when a problem arises. Why is that? It hurts me terribly.
I love this site! I hope to hear from you and I think the fact that I stayed positive, refused hospice and more is the reason that I am still here. I know this monster will return, but for now… I enjoy and love my grandchildren.
Thank you, Linda
Dear Linda,
THANK YOU for sharing your story of hope, strength and inspiration. I can't tell you how happy I am that you have grandchildren and are able to enjoy them. Please continue to be well and stay in touch.
All my very best wishes to you,
Hollye