Hospice & Palliative: TERMS

H&P   |   THE TALK

Hospice medicine is a unique specialty. Palliative medicine is also a unique specialty. What’s confusing is that both specialties are combined into one fellowship. Let’s talk about how to separate the two in order for you to effectively communicate with patients – trust us, they will almost always not know the difference. Let’s also break down who the key team members are you will encounter in both, and what you can expect out of each when you consult them.

Palliative Medicine

Palliative medicine is for patients who are chronically and/or seriously ill. The focus of this medical practice is to relieve symptoms and stress from extensive illness. This includes pain, breathing, and symptom management for chronic conditions like cancer, COPD, CHF, kidney failure, dementia, etc. For instance, a patient with colon cancer who has a large mass making it difficult to pass stool could have a diverting colostomy or a tumor debulking surgery, and this would be considered a palliative measure as its focus would not be curative, but to alleviate pain and suffering. Palliative medicine would help coordinate this care and be part of the team as they have a more thorough understanding of the bigger picture in a patient’s goals of care.

Another example would be a patient, Mr. B with severe lung disease, advancing pulmonary fibrosis, let’s say – morphine does an amazing job helping him not hunger for air. Palliative medicine would manage and coordinate his care, but also educate him how to manage symptoms and exacerbations himself to prevent unnecessary hospital admissions. If Mr. B went to the ER, he’d be given a nebulizer and placed on high flow, then BiPAP when his sats don’t improve. Morphine may not be given to help decrease his air hunger, nor will Ativan likely be given to decrease the anxiety associated with not being able to breath, further exacerbating his current state with increasing tachypnea. How likely do you think it is Mr. B would be intubated when his mental status alters, and then later dies unaware of his surroundings in the ICU despite having an advance directive stating otherwise? We know you’ve seen it more than you care to admit, because the rate of patients dying in the ICU in America is literally twice as high as every other country on our planet. Check out a recent article in the Huffington Post written very well by a wife who’s husband died in this manner, despite having a well-documented advance directive. Palliative medicine is a way to prevent this scenario.

Palliative specialists often work with patients and their families for months to years in conjunction with their care team managing their primary illness. They also help patients work through advance directives and POST forms so there is a clear understanding of goals of care, and that this is communicated with both family and the patient’s power of attorney.

Hospice Medicine

Hospice medicine is a focused form of Palliative medicine that primarily treats patients with less than 6 months to live, and specifically works on a transition of care from quantity of life to quality of life. This means discontinuing treatment modalities that focus on prolonging life like chemotherapy, aggressive surgery, or intensive care, and instead changes goals of care to quality of life. Patients can maintain their PCP during the entire process if they like, but Hospice is also able to take care of a patient’s primary care needs. It’s also important to note that Hospice care can be continued and discontinued at will – essentially, a patient is not “locked into” Hospice care once they enter, but rather, can come and go as deemed necessary by their current health conditions and goals of care. You’ll be surprised how patients can flip-flop from DNR/DNI to full-code and back and forth as they become acutely aware of their time left.

Let’s talk about Mr. B again, but in the context of transitioning from Palliative medicine to Hospice care. His exacerbations requiring him to go through his “breathing emergency training” where he takes another dose of morphine, Ativan, and cranks up his BiPAP will eventually become more frequent as his disease progresses and his health declines. His activities of daily living will require increasingly more assistance, eventually reaching the capacity of what his immediate support system can provide. This is where Hospice comes into the picture – not when Mr. B is actively dying, but while he’s still actively living. Hospice would provide the following services for Mr. B:

  • home health visits as frequently as needed with nursing, health aides, volunteers, social workers, chaplains, nurse practitioners and physician assistants, and physicians
  • arrange equipment for health needs
  • continues and assumes the role of Palliative medicine
  • can assist in funeral planning, financial management, legacy therapy
  • bereavement counseling for Mr. B and family during illness, but also for 13 months after his death
  • access to General In-Patient at a hospice house for either acute exacerbations that cannot comfortably be managed at home or for respite care for family and caregivers
  • 24 hour access by phone for medical assistance, and PRN face visits when needed

Your Team

  • Nurse Practitioners and PA’s can act in many capacities in the same role as a resident in patient care. They lead home visits with nursing present, sign and coordinate medication changes, manage General In-Patient visits in hospice houses, and are an incredible tool for your learning.
  • Nurses are in charge of medical management, physical assessment, disease progression, monitoring decline, patient and family education and about expectations and preparation. They are your front-line providers.
  • Chaplains do life review, ask questions about ethics/existential, try to be non-denominational, are connected to local religious groups, help with funeral planning (can do funerals for family when people are not with a church), and are even able to do marriages at bedside should the situation arise.
  • Social Workers are the non-physical side: spiritual, social, “what do I have, what do I need, where do I get it.” They will help with funeral arrangements, managing finances (person dying managed everything prior), legacy therapy (what does patient want kids to remember, grandkids, etc.); if patient has young children, they help to write birthday and graduation cards for life stages. When a patient needs more help at home than what Hospice can provide, they track down other benefits from state, VA, Medicaid, nursing home, hire care givers, etc.
  • Bereavement Team tries to get in early regarding anticipatory grief (what life will be like without family member), follow family 13 months after death with as little or as much as they need with mailings or regular scheduled visits, support groups, memorial, grief camp for children, etc.
  • Hospice Aides do hands-on personal care: light housekeeping, bathing, laundry, cooking. They are crucial to helping so family can still go to work.
  • Volunteers: spend short periods of time in home, go to grocery store for family, drive patients and family places, help plan celebrations (weddings, birthdays, going fishing, making cakes, get flowers), a lot of clerical work, and assist in short-term respite so caregivers can tend to personal life matters.

Now that you have a good grasp on what Hospice and Palliative medicine are, the services  they provide, let’s walk through how to discuss these topics with patients and their families.