Chronic pain and illness have no virtues. They ruin relationships, cripple families, and erode away at living a quality life. Pain does not build character — unless you are a ballet dancer. After dancing for years, I am surprised by the number of healthcare clinicians who also dance ballet. We can attest that ballet dancers thrive on the grueling discipline and dancing through pain. Patients, on the other hand, prefer relief of physical pain and their families want a pain-free experience for their loved one.
We daily read about healthcare costs and reform in the news. Reports show a significant portion of the cost of care is incurred by those with chronic conditions due largely to readmissions, from inconsistent delivery of quality care, by those toward the end of life, and because of the general need for better care coordination between physicians and health organizations.
Think about all the parties involved with health care delivery – hospitals, physicians who are often independent consultants working within the hospitals, patients, and patient’s families. Each person is focused on their particular perspective: Respiratory Therapists on breathing, Nurses on comfort and implementation of complex care plans, Primary Care Physicians on diagnostic and curative interventions, Specialist Physicians on their particular “specialty” part of the body system, families who want everything and anything done for their loved ones, and patients just want to feel better and live a quality life. The health care system can be a quagmire of confusion for many, and it can quickly become emotionally overwhelming and a painful process for patients and families who are desperately trying to make the right decisions and know the right questions to ask.
The typical response we get when mentioning palliative care is, “What is that?” Palliative comes from the Latin word palliare which means “to cloak” – The idea for palliative care originated as comfort care because palliative is the “cloaking” of pain and mental and physical relief of symptoms from a disease when there is not the viability of a cure, especially toward the end of one’s life. But over the last several years, the successful process of palliative care teams has evolved into so much more. They address some of the major issues being discussed with healthcare reform regarding cost control and obtaining the highest quality of care at an individual patient level, especially for severe, complex and chronic conditions, regardless of age or having a terminal prognosis.
Palliative Care teams are specialists (many of whom are certified) comprised of Nurses, Nurse Practitioners, Physicians, Pastoral Care, Social Workers and sometimes Pharmacists. The teams are in place to support patients and their families facing complex or chronic illnesses, potentially long and/or frequent hospital stays, and/or complex psycho-social needs. By using a team approach, all interventions are coordinated to meet the patient and family care goals. You or your loved ones can be treated holistically, not as a sum of body parts treated by multiple specialists or have your care dictated by general care guidelines.
If you simply have a broken leg, need your appendix removed, or are having a baby, it is not complicated to get care with positive results. With a rapidly growing population of chronically and critically ill patients and an aging population, healthcare becomes more complicated – that is when the Palliative Care process helps you because it is medical care coordination. The teams achieve quality care outcomes and patient satisfaction by:
• facilitating open communication between caregivers, patients and patient families,
• establishing realistic care goals based on the patient wishes and informed families,
• reducing costs by determining necessary tests and treatments/procedures,
• coordinating medical care among the myriad of staff, and
• providing emotional and spiritual support.
I had to take a break in the middle of writing this article as I received a call from a dear friend asking, “Do you have time for coffee?” Being in healthcare, it is common for many of my friends to call me relating to health issues so I sensed something was up. As we met, Joan started telling me about her 79 year old mother who is in a suburban hospital with hip pain. The doctor told her mother Ann, she needs to go through the emergency room in order to get x-rays and have tests taken so she can be admitted. Joan continued telling me the x-ray showed that her mother has a fractured hip and also Ann was told two weeks ago she has cancer, the tumor being on her pancreas and she is suppose to have an oncology consult today at the city university hospital, “Oh wait, I have to remember to cancel the appointment, excuse me a moment.” After the call Joan continues, “The doctor also told her she has a heart arrhythmia and needs lots of tests and needs to be seen by a cardiologist. She has been a lifelong smoker and right now can’t even get around and she just wants to know if she will be able to walk. I have small children at home I need to care for, my one sister lives in Florida and she is over the top dramatic, my brother is in Wisconsin and above it all, my other brother is not even responsive.” I looked at my dear friend so overwhelmed frantically trying to figure out what to do first as she was already thinking what it is going to mean after the hospitalization, can her mother live alone or is she thinking she is going to move in with us, is her prognosis terminal? I stopped her and simply asked if palliative care has already been called in and if not, get them involved because she is a classic case for needing them as an advocate to orchestrate all these moving parts, enable the right questions to be asked, determine and streamline the number of tests for what is really needed with a sensible priority based on first and foremost Ann’s wishes, and after her mother and siblings have been properly informed of realistic outcomes and what it all means. I advised her to find out if the hospital required a physician script to be written for them to become involved and if so, have the primary care physician write to involve palliative care for establishing Ann’s patient care goals. My friend decompressed, relaxed realizing she does not need to navigate through this alone and assume all the stress of trying to figure everything out.
Without personal support from experts within the system, patients with serious, chronic diseases or multiple health conditions may be under- or over-treated. More times than not, Palliative Care members hear patients comment, “You are the first person to put all the pieces together.”
Palliative care is frequently unknown, misunderstood, or confused with Hospice (even among healthcare providers). Chronic illness and chronic pain are not always fatal. It’s possible to live a long life with a chronic condition. But unless you receive the proper interventions and care, life can take a heavy financial, emotional, and physical toll on everyone it touches. Despite consistent positive psychosocial, financial, and satisfaction results, these highly experienced and often certified teams continue to be unknown or under-utilized. A friend outside of healthcare asked us, “So why isn’t Palliative Care used more and what are the downsides?” Great questions!
(1) Word of Mouth: A big hurdle for the utilization of Palliative Care teams is getting the word out that it exists.
(2) Not to be confused with Hospice: Hospice is the care for keeping patients comfortable while they die with dignity. Palliative Care teams coordinate medical care for the living and will refer to Hospice when warranted.
(3) More than end of life care: Palliative Care does focus on comfort and pain management, however, the success of team patient advocates has positive cost savings and quality outcomes for complex or chronic patients regardless of age or prognosis.
(4) Attending misconception: Occasionally primary care physicians might be resistant because of the perception of losing control of patient care. But physicians quickly discover the benefit of having strong facilitators helping to keep open communication with all the various family members (oftentimes who are located remotely and with various schedules of availability and emotional stressors). Physicians frequently do not have the luxury of spontaneous free time to sit with families because they are caring for other patients and emergencies.
By establishing patient care goals based on informed choices with realistic outcomes, the resonant theme from most patients and families is “why hasn’t our doctor talked to us about these things before?” If you or your family members feel overwhelmed or uncertain on the course of treatment and would benefit from Palliative Care, ask for it!
Palliative care teams have shown a tangible cost savings by reducing recurrent acute episodes and streamlining tests and focusing on necessary procedures – not a downside! Studies from the Center for Advancement of Palliative Care (CAPC) have shown that Palliative Care reduced inpatient costs per admission by $1,696 – $7,563 per patient1. These cost savings add up to millions in savings per year. Given the ongoing concerns regarding healthcare costs, Palliative Care is a realistic financial beacon of hope amid a sea of rising healthcare costs.
Even those of us who understand the healthcare system as clinicians and consultants experience personal situations where clinical expertise clashes with the heart-wrenching decisions when it affects someone we love. When facing this situation with my brother-in-law, even as a healthcare provider I struggled with difficult life decisions. The Palliative Care team felt like the cavalry rushing to our rescue, helping me and my family with essential reality checks needed to make rational decisions regarding his care delivery.
The focus on quality of life is sometimes sacrificed when the drivers are the need to “cure” everyone of everything, or defensive medicine is practiced to avoid potential legal outcomes, or there are strong emotional responses of families to have anything and everything done for their loved ones. If you happen to be a ballet dancer, feel free to continue to experience pain with a smile on your face while you dance. For the rest of you who like to live with the highest level of health and comfort and navigate the healthcare system pain-free, when the situation warrants call for Palliative Care assistance.
Let’s infuse more personalized care, reality, and dignity into the healthcare system for complex, chronic and multifaceted conditions, and put decision making back where it belongs…with the educated patient and family.
1Cost Savings Associated With US Hospital Palliative Care Consultation Programs, Arch Intern Med. 2008;168(16):1783-1790
2Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries, R. Sean Morrison, Jessica Dietrich, Susan Ladwig, Timothy Quill, Joseph Sacco, John Tangeman and Diane E. Meier, Health Affairs, 30, no.3 (2011):454-463, doi: 10.1377/hlthaff.2010.0929