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What is Palliative Care and Why is it Important to Talk About End-of-Life Decisions?

An Innovative and Compassionate Response
What is Palliative Care?

Orginially posted 11/2014. Updated 8/19/15

Recently, the Centers for Medicare and Medicaid Services (CMS) announced a new plan to reimburse doctors who engage in end-of-life discussions with their patients. American medicine has long placed emphasis on prolonging life by any means possible, a decision that in some cases greatly reduces a patient’s quality of life. Enabling doctors to be open and forthcoming about a patient’s end-of-life choices before a patient and their family reach the point of having to make such a critical decision can provide a better understanding of choices available to older adults in their final months, weeks or days. 

A deeply exhausted 93-year-old woman is getting ready to die and wants to halt dialysis and hospitalizations, but her daughter is not ready to let her go and pushes for aggressive care.

A frail 89-year-old man is a secular Jew (not observant) and never spoke about his advance care directives to his children. One of his sons, an orthodox Jew, believes the goal for treatments must be to prolong life, whereas his two sisters urge the team to shift to comfort measures.

An elderly woman with advanced dementia has a written directive that states, “No extreme measures for me ever!” She is now “pleasantly confused” and comfortable with her new life in long-term care. Does the family press on with aggressive care, hospitalizing her for repeated pneumonias, or honor her previously stated wishes?

A son ruminates, “Should I listen to my mom in rehab when she says she’s too tired and is ready to die? Maybe she is just depressed and medication would help.”

As a palliative care psychologist and chaplain, I have the privilege of working with patients and families during an extraordinary time when life and death are in the balance. 

Many seniors live blessedly long, as we are able to solve more serious medical conditions with aggressive treatments. But when do the burdens of invasive medical procedures and frequent trips to the hospital become too painful and exhausting to warrant such treatments? When should the goal of care shift from prolonging life to mitigating pain and relieving suffering? The pros and cons of aggressive curative treatment and comfort measures must be carefully explored.

The Palliative Care Program for Hebrew SeniorLife is a compassionate and innovative response to the pressing end-of-life care needs of our residents and families. A specialized interdisciplinary team assists with family discussions.

  • The physician manages pain and provides much-needed information about prognosis and treatment options.  
  • The chaplain addresses spiritual and emotional needs, such as the struggle to maintain dignity, reconcile with loved ones, or understand the meaning of their suffering. 
  • The social worker helps families manage conflicts regarding goals of care and mediates between staff and family when differences arise.

This creates a context within which goals can be articulated more clearly, and ensures the treatment plan will match the patient’s wishes.

How long do you have to be healthy in between hospital stays to make it worth your while? When do you ask for initiation of heavy pain medications, even though they make you sleep most of the time and decrease your appetite? How many hours per day must be pain free to make a life worth living? There are no blood tests that provide the answers to these questions, no protocol written in a hospital handbook. These are deeply personal choices, guided by one’s own past experiences, family ties, and degrees of joy and suffering. And yet, how is a daughter supposed to decide when to stop treatments for her own beloved mother?  How is a father supposed to know when to “give up” the fight and leave his family for a peaceful end?

The palliative care consult team provides the expertise and structure for personalized, respectful identification of patients’ goals of care. This intervention and follow-up support can help mediate the high levels of stress families experience as their loved ones linger with advancing dementia and/or rapidly deteriorating health conditions. The palliative care team brings clinical expertise, helps families define their goals, provides emotional and spiritual care, and gets all involved parties working together toward decisions that match patients’ personal values and needs and promotes the best quality of life during this precious time.

Jody Comart, Ph.D.'s picture

About the Blogger

Director of Palliative Care for Hebrew SeniorLife

Jody Comart is a clinical psychologist and chaplain, coordinating specialized end-of-life care throughout the organization. She provides pastoral counseling to patients and families, offers training for staff in end-of-life care, and is leading the effort at Hebrew SeniorLife to develop palliative care through clinical, educational and community initiatives. Dr. Comart conducts research on patient outcomes in palliative care and designs educational initiatives for best practices. Dr. Comart came to HSL with 20 years experience in private practice, specializing in evaluation and treatment...

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Comments

For us Seniors and our children, being able to take control over and precisely guide medical treatment based on the patient's express wishes is a serious issue. My family and I found a very simple but powerful tool for creating that personal medical directive so there is no guessing nor guilt laden conflict about care or even end of life. Please take a look at this "Take Control" medical directive that we can all easily deploy. www.thisiswhatiwant.info Remember also that its easily updatable every few years so it remains valid as our wishes.
Thank you for sharing this, Neil!

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