What is palliative care?
What is the distinction between palliative care and hospice?
Why is this a relatively 'new' area of medicine?
What are the most common situations in which palliative care can significantly improve the patient's quality of life?
How does someone know palliiative care is right for the situation they are facing?
What medical professionals deliver this type care?  Where is it available?
For someone considering palliative care for themselves or a loved one, what are the most important questions they need to ask?

What is palliative care?

Palliative care focuses on relief of complex physical, psychological, social or spiritual problems related to life-limiting, terminal, or irreversible illness.

The goals of palliative care are:
    -to improve physical, psychosocial and spiritual symptoms associated with advanced illness
    -to help the patient and their loved ones cope including transition through the stages of illness
    -to help determine prognosis and plan for the future (advance care planning)

   
What is the distinction between palliative care and hospice?

People can become eligible for hospice typically if they have a projected life expectancy of six months or less. The philosophy of hospice care focuses on end of life care including pain management, overall comfort and emotional and spiritual care of the patient and their family. Medical therapy which is considered “aggressive” (chemotherapy in most situations; dialysis; radiation therapy or even intravenous antibiotic therapy) is not considered consistent with hospice philosophy so is not usually part of a hospice program.

Palliative care services may be  provided simultaneously with all other medical treatment, including life sustaining treatments such as the ones outlines above. It may also serve as a transition to hospice. 

 
Why is this a relatively “new” area of medicine?

Excellent question.  My personal belief is that the rise of palliative care parallels the rise of more sophisticated medical and surgical technologies and our ability to keep people alive longer than ever before. Again, this is my personal opinion but many times medical care is focused on outcomes (i.e. did the operation reduce the patient’s cancer burden or did they survive coronary bypass surgery free of infection). The focus of modern medicine again is frequently on complex technology and not necessarily on the patient’s experience of the care they are receiving.

In some ways palliative care hearkens back to the days when our main emphasis was the experience of the patient – were they in pain and was the pain physical, psychological, spiritual or a combination of the above? Palliative care can include modalities such as guided imagery, therapeutic touch, journaling and music therapy. These are high touch – not high tech. 

What are the most common situations in which palliative care can significantly improve the patient’s quality of life?

Probably the most common situation in which palliative care is used is in the area of pain management. It is true that most hospitals have pain management services but these services commonly utilize procedures such as nerve blocks or steroid injections. This can be a useful adjunct to palliative care but our focus is more on chronic pain management techniques. Typically some type of narcotic pain medicine is used and other medicines can be used as adjuncts or as narcotic-sparing drugs. Our palliative care program utilized a team approach which included occupational therapists trained in healing touch, chaplains, advance practice nurses specially trained in pain management as well as social workers, a clinical pharmacist and physicians. Also, our hospital offered in-depth training to nurses and physicians on current methods in pain management.

One of the things we saw most frequently was under-dosing of pain medicine, especially narcotic pain medicines. We did a lot of education on the floors with the staff caring for our patients.  We helped nursing staff feel more comfortable with the relatively large doses of pain medicine our patients frequently needed. Relieving physical pain is extremely gratifying – both for the patient and their family and for health care professionals. Often when a patient’s pain is well treated they can begin to focus on other things such as advance care planning.

In my institution the palliative care service was rarely the primary service for the patient. We were consulted by their primary physician to assist in their management. The services we provided were complementary to more traditional services patients were receiving. In other words, we treated patients in the context of their entire health care team. Our services were generally well received by the other treatment team members because frequently they were frustrated that a patient’s symptoms weren’t being controlled by the things they were doing.

 
How does someone know palliative care is right for the situation they are facing?

Another good question. At this point not every health care institution has a palliative care program and as you and I discussed, many that do have them are geared toward inpatient care. I say this as a caveat to your participants to know that this may not be universally available.

However, the clinical situations that would prompt one to consider palliative care are typically a serious and life-limiting illness but not necessarily a terminal illness. A typical clinical scenario is a patient with intractable congestive heart failure who may need to be hospitalized from time to time for aggressive treatment of their symptoms.  Another scenario is a very elderly person who has frequent ICU admissions for heart failure or renal failure or an infectious process and who has some cognitive dysfunction.

These patients and their families can clearly benefit from palliative care counseling and advance care planning. I have not emphasized this aspect but palliative care practicioners typically have in-depth discussions with patients and their families about their choices for future care.  Hospitals (and doctors) tend to focus on the “Do Not Resuscitate” order that if written and signed, would prevent a patient from undergoing painful and generally futile resuscitation efforts. We prefer to think of this as “Allow Natural Death.” This is a new paradigm that medical professionals are just now learning. There is a psychological difference in the two – the DNR order states that you are in essence withholding resuscitation. More positive is the AND order – it suggests the death is a natural process and that allowing it is the right thing to do in many cases. 

What medical professionals deliver this type of care? Where is it available?

I have previously described how palliative care was delivered at my hospital. As I mentioned, the care team was made up of multiple health care professionals from different disciplines. In our institution the nurse practitioners would usually see the patient first and many times they were able to address the clinical problem successfully.  I am biased but nurses tend to communicate with patients and families better than most doctors so I think this is a good system. However, when the nurses encountered resistance to the things they were suggesting, we physicians were involved to give the “weight of the doctor.”

For someone considering palliative care for themselves or a loved one, what are the most important questions they need to ask?

First, they need to ask about whether a palliative care program exists at the institution where their loved one is a patient. They should also address this question first to the treating physician(s).  It is paramount that the palliative care team be seen as an adjunct to the primary team and not as someone who is coming in to “take over” the care of the patient.
Beyond that, if a palliative care program exists, one should ask what services are provided. Again, pain management is one of the crucial aspects of this type of care and I would want to know  how experienced people are in this area.

Dr. Sue Bornstein MD, is board certified in Internal Medicine.  Dr. Bornstein has particular expertise and interest in caring for older adults as well as in improving patient quality of care.  In addition to her own medical practice, she served in numerous physician leadership and teaching capacities at Baylor University Medical Center in Dallas, Texas, including President of BUMC Medical Staff, and as Associate Medical Director for BUMC’s Palliative Care Consultation Service.  Currently, she is a Senior Physician Consultant with The Bard Group, a consulting firm specializing in helping healthcare organizations achieve extraordinary results.