Being Present with the Dying: Hospice and Palliative Care

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Palliative care is often misunderstood – generally thought of as only appropriate for end of life care.  The purpose of palliative care is to relieve symptoms, comfortably and holistically, at any stage of illness regardless of the prognosis.  Hospice – a subject often avoided – is designed for end of life care.  Hospice provides the utmost care, concern, empathy and support.  Both programs are invaluable for the achievement of ultimate comfort – addressing the physical, emotional and spiritual facets of those in their care.

Palliative care is meant for people with serious illnesses.  It addresses symptom, stress and pain relief to achieve optimum quality of life.  Although palliative care is often thought of for the dying or for those who have forgone further treatment, it can be beneficial at any stage of illness.  Palliative care uses a holistic approach to illness and coordinates physicians, nurses, social workers, therapists and chaplains who address the physical, emotional, psychosocial and spiritual needs of those dealing with a difficult illness.  Palliative care can benefit people during any stage of an illness, be it chronic or acute.  Some palliative care programs have teams who work with patients while they are in the hospital; others take place in a clinic setting.

The notion of hospice is fraught with fear, a fear that no doubt stems from the fear of death itself, a taboo subject in American culture.  Even those who are healthy, for whom death is abstract, have difficulty broaching the subject and avoid preparations for serious or even fatal illness.  To address the subject while already traumatized by illness is even more fraught and uncomfortable.  When we enter a hospice program, we acknowledge that the end of life is approaching and curative treatment options have been exhausted. One criterion for admittance to a hospice program requires a six month prognosis of mortality from a physician.  Giving up on treatment and the possibility of a cure, and instead focusing on end of life comfort, can be very difficult to accept.

Hospice focuses on comfort care and addresses the whole person – physically, mentally, and spiritually – with teams of doctors, nurses, social workers, therapists, and chaplains.  Having worked in hospice programs for many years, I’ve seen patients and their loved ones find the experience deeply comforting.

While most of us think of hospice as a facility one goes to die, this definition is limited and exacerbates are deepest fears.  A more enlightened way of describing hospice is that of a holistic support program for significant others and for patients who have exhausted curative treatment.  While hospice programs in general disallow aggressive treatments, they encourage treatments that provide comfort, including at times chemotherapy and antibiotics.  Comfort is the paramount goal of care.  Perhaps most importantly, hospice is not limited to inpatient facilities.  Those health care professionals who are available inpatient are also available to people in their home.  These home hospice programs create the same environment of caring and commitment that is found in an inpatient setting.  In addition to providing services at home, home hospice programs provide the same support wherever the patient is settled, including in a facility such as a nursing home.  Those working in hospice programs are willing to work with any facility where they can offer support to the staff and oversee patient care, making sure the comfort and needs of the patient and their loved ones are met.  This provides greatly to the comfort of significant others who are otherwise at the mercy of the facility culture.

Hospice programs are flexible and work with the patient and their loved ones in any way they can.  They are generally covered by private insurance, Medicare and Medicaid.  People who live longer than the hospice required prognosis of six months can be discharged and reinstated as the need arises.  Hopefully the concept of hospice care will become more familiar and commonly used such that the fear and avoidance associated with hospice lessen.  This familiarity will enhance and deepen our empathy and our understanding of end of life care and, in turn, our appreciation and mindfulness of living.  I will write about the emotional aspects at the end of life in a future blog post.

Being Present with the Dying: Decisions

_brain_surgeDeath’s imminence engenders a plethora of decisions, decisions that for the most part can be made ahead of time.  It’s difficult enough to confront these issues before we are dying and while they remain in the abstract.  Faced with such decisions while on our deathbed only adds to the emotional turmoil.

Some of these decisions can be stipulated in the necessary corresponding documents I wrote about in my last post.  Such decisions include if and when to start or remove nutrition and hydration, balancing levels of pain relief for maximum quality of life, and determining whether one prefers to die at home.  Although wanting to die at home often becomes out of one’s control, planning can help facilitate that likelihood.

NUTRITION AND HYDRATION:  Many of us equate the withholding of nutrition as starving the patient, or withholding of fluids as forcing the patient to die of thirst.  In fact, a patient is often more comfortable when these resources are withheld.  Intravenous feeding (TPN) or the use of a feeding tube are not analogous to eating; artificial hydration is not analogous to quenching thirst.  While artificial hydration and feeding are indeed helpful for getting through various crises, these considerations are irrelevant when the patient is dying.  Withholding these treatment options does not foster discomfort for the patient and may help lessen trauma during the process of dying.  In the final analysis, what is most important is the comfort of the patient, secondary is the comfort and peace of mind of his or her significant others.

PAIN CONTROL:  Because pain is subjective and difficult to quantify, the issue of pain control and pain medication is often fraught with conflicting attitudes, opinions, and feelings.  First, pain tolerance differs for each individual – some of us are more sensitive to pain and discomfort than others.  One must also take into consideration drug tolerance affecting levels of alertness.  Many patients desire a certain level of alertness – at least enough to communicate – and are willing to adjust their pain medication accordingly while others may want to be less aware.  Finding the desired balance for each person is optimal.  To complicate matters further, there are the needs and desires of family and significant others who may wish to maintain communication with the patient at the expense of the patient’s comfort.  It is important to respect the wishes of the patient and have those wishes take precedence over the needs of others, allowing one at the end of life as much control as possible.

DYING AT HOME:  While most of us would rather die at home than in a hospital or nursing home, the end of life is unpredictable and complicated such that dying at home is often out of one’s control.  When it is possible to die at home, there are many things to consider and arrange.  Perhaps the most difficult decisions revolve around whether to continue treatment and sustain life versus letting nature take its course.  The end of life is fraught with unpredictability and the forces of wanting to stay alive often conflict with the desire to avoid the hospital.  Everyone making this decision is working through a unique process and will come to a decision in his or her own way.  It is the role of caregivers to support and encourage the patient in whatever decision he or she makes. The knowledge and support of health care professionals are invaluable in guiding this final process.  Both palliative care teams and hospice programs offer such support and address the many issues involved in keeping a dying patient comfortable.  Both provide holistic guidance to help facilitate and realize the wishes and needs of those nearing the end of life and their caregivers.  Another post will discuss these vital programs.