I currently teach, or have taught, many different courses in the School of Nursing. I enjoy being with freshmen students in Pre-nursing Seminar. The students in this course are taking the arts and science courses that are prerequisites for nursing courses. Their excitement is contagious!

I am most energized when I teach the registered nurses who are returning to college for their baccalaureate degree. These students bring many years of professional nursing experience to this educational endeavor and keep me on my toes.

My clinical, educational, and research interests are in end of life care.  Last year I had the opportunity to attend a specialty course sponsored by Harvard Medical School. Forty health care professionals from around the world attended the Program in Palliative Education and Practice for an intensive week-long educational session and six months of collaborative work on individual and group projects, followed by an additional week-long session. My professional practice has been in neonatal nursing when it was an emerging specialty, pediatric oncology, and care of children who were HIV positive when treatment options were limited. My nursing career has been in palliative care. The Harvard PCEP program formalized years of clinical practice and helped me formulate future professional and educational directions.

Hospice care is directed at providing relief to a person at the end of life through symptom and pain management to provide comfort and maintain the highest quality of life for as long as life remains.  The focus is not on death but on compassionate specialized care for the individual and their family.  The members of the hospice team support the person and family through the dying process and surviving family members through bereavement.

Hospice care can be provided to people wherever they live-in a private residence, assisted living, a nursing home, or a hospital.  

Palliative care embraces the hospice philosophy of care and seeks to bring this approach to a wider group of persons than currently served by hospice programs.  Palliative care is not only for the imminently dying but also for those wrestling with complex clinical and personal decisions associated with an eventually fatal illness.  Specialized palliative care services can be offered in conjunction with curative treatments to both seriously ill people and those with advanced chronic illness in a broader range of settings, including intensive care units.  

Hospice and palliative care is given by a team of people knowledgeable in end of life care.  The team is made up of many members including but not limited to: nurses, nursing assistants, clergy and spiritual counselors, social workers, physicians, pharmacists and volunteers.  Additional team members will be asked to assist with any special needs that the person and family may have.  The team communicates with the individual and family as well as each other to assure that individual goals are being met.  The whole person is cared for including physical, emotional, social, and spiritual needs.  

Specialized care giving at the end of life exists for conditions such as cancer.  Hospice and palliative care services may also support those with varying conditions such as heart, lung or kidney disease, lupus, or Alzheimer’s disease.  Both hospice and palliative care teams seek to relieve symptoms of an illness but also help the person and family reach personal goals, reconcile conflicts, and derive meaning from their experiences at the end of life.  

My suggestions would involve interventions to prevent another family experiencing the heartache that we are witness to. There must be intense, and recurrent, discussions on raising awareness and initiating the process of completing advance directives that specify how the individual would want their care managed if they were seriously ill or at the end of their lives.

Do you think there should be a role for the government?  It appears that some in the Congress (on both sides of the issue) believe that new laws on disability rights need to be written.

The government has already established laws that must be followed. Changes proposed by individuals and constituencies must preserve the balance between official standards broad enough to protect basic human rights for all with individuality to preserve personal choice in various situations and prevent the prevailing political ideology of the moment to dictate intimate personal and family decisions.

I have kept up with discussions in the media and listened as people spoke, usually very passionately, about Terri’s story. I know what my wishes for myself would be in a similar situation. I do not feel that I can respond to the question, as posed, because I do not think any one of us knows the details of a family crisis that evolved over a decade and a half.

Discussions with students in the School of Nursing have centered on the role of the nurse as central to helping people they are caring for to navigate the healthcare environment to prevent a similar devastating situation. The nurse must serve as the advocate for the family in maintaining their physical, psychosocial, and spiritual integrity. The nurse and interdisciplinary members of the health care team must work with the person and family to enhance and maintain communication and utilize all available resources to achieve the goals of the individual in their care.

Students in the School of Nursing have the opportunity to experience care giving in a hospice or palliative care setting. As part of that experience, the students add to a journal that chronicles their thoughts, feelings, and experiences about working with people at the end of life. A recent entry exemplifies the essence of the current discussions:  

“In the end, having your wishes met and made a reality by caring and competent people is the greatest gift that those who love you can give.”

Some resources available to initiate family discussions in relation to health care choices are: