Take Charge of Your Health - National Hospice Month

Life is a balance of holding on and letting go.
-Rumi 

None of us like end of life discussions; they are extremely difficult, highly emotional, and patients and loved ones do not always agree on what the priorities should be and the best plan of care. But it is important to have these very hard conversations, ideally when we are clear minded so we can actively participate and voice our care wishes.

When people hear the word hospice, they may equate it with withholding or ending treatment prematurely, believe it is only for people in their very last weeks or days, or associate hospice with giving up. Another common (though unfounded) concern is that by discussing end of life care, the patient will become depressed and anxious. These perceptions can lead to tension and conflict within the family and it is not uncommon for patients and family members to disagree about the best plan going forward.

Physicians and nurses as well as psychologists, chaplains, and social workers can be very helpful in stimulating conversation, managing emotions, and providing guidance in these difficult end of life discussions. These health care professionals are trained to educate and inform loved ones, dispel misconceptions, deal with family members who may be very fearful, traumatized, or in denial, and help everyone get and stay on the same page. So don’t hesitate to call on their expertise and ask for help.

Hospice is about quality of life for patients and loved ones alike - providing comfort, making whatever time is left richer and fuller, and helping ensure a dignified death. With hospice, care is specifically designed around the patient’s wishes and loved ones receive critical support as well.

Hospice is about care that ensures the patient’s wishes are honored and that the “whole person” is supported - physically, mentally, socially, emotionally, and spiritually. Hospice’s philosophy of care does not look to prolong life or hasten the dying process, but instead enables the patient to feel a greater sense of control and make the most of the time they have. This goal is accomplished through comfort care and symptom management.

Deciding what treatment and care you want - and what care services you want to avoid - is important and the best time to make these decisions is when you are feeling good and your mind is clear (none of us wants to fall into the trap of needing to have decisions be made for us when we are incapable of doing so and have left no instructions.) To this end, it is important to have an Advance Directive in place and review it with your loved ones so they are clear about your beliefs, wishes, and priorities for end of life care.

Hospice serves people of any age dealing with a life-limiting illness. People with a life expectancy of six months or less can be admitted into hospice care. Patients in need of hospice care may have dementia, or cancer, heart or lung disease, but whatever the specific illness, the diagnosis is terminal. To get started physicians will execute an evaluation order and a representative of the local hospice organization will meet with the patient and family to discuss their services and benefits and to receive consent. Some patients live beyond this six-month time period and continue to receive hospice care. At the same time, patients can withdraw from hospice at any time they wish.

In terms of the hospice team, most hospice organizations have a Medical Director or Attending Physician who will develop a personalized plan and supervise the patient’s plan of care. This individual often coordinates with the patient’s primary care physician. Other hospice members of the interdisciplinary team can include:

Nurses (Registered Nurses and Licensed Vocational Nurses) monitor the patient, coordinate services, and deliver care. Nurses also work closely with the family to guide them on how they can best support their loved one.Hospice aides most often assist with providing personal care: bathing, mouth care, toileting, getting the patient dressed, providing assistance with walking, and ensuring the environment is safe.Medical social workers provide education and counseling to the family and patient.Chaplains provide spiritual support.Bereavement counselors help with loss and grief.Trained volunteers provide companionship to the patient and respite for caregivers.

Hospice providers are renowned for their compassionate communications, trusted relationships, empathy, observation and assessment skills, high ethical standards, and resiliency. They can be available on a 24/7 basis.

Not all hospice organizations offer the same services, but generally speaking hospice care includes:

Health care services such as: pain relief, the management of medications, wound care, assistance with bathing and dressing, and access to a dietician to discuss nutrition and hydration concerns as well as medical equipment such as walkers, wheelchairs, oxygen tanks, hospital beds, shower chairs, and supplies;Emotional support through communication and services such as pet therapy, music therapy, journaling, healing touch, massage therapy, and spiritual counseling;Practical assistance with advice about finances, insurance and how to handle the tasks and responsibilities when someone passes away.

Most patients in the U.S. are eligible for all their hospice services to be covered by Medicare Part A, however, be sure to confirm this with your hospice provider. Private insurances also typically have a hospice component.

Hospice is a life-changing service for patients and loved ones alike. In addition to pain relief and symptom management, patients and family members benefit from education, emotional support, assistance with financial issues, respite care, and grief support. Most important of all, hospice helps patients live out their remaining time with dignity, greater comfort, meaning, and purpose.