There's No Place Like Home: Understanding the Hospice Experience

In nursing school, I was drawn to the "down and dirty core of nursing" that hospice care provides the patient, family and the nurse. I came straight out of nursing school and was privileged to work for years with the Karen Ann Quinlan Hospice care center. My heart was forever opened to this nursing specialty. I have, over my 20 years of nursing, continued to keep my foot in the door working with various Hospice facilities as a counterbalance to the Cardiac Intensive Care work that I have done as well. Having been on both extremes of the technical nursing spectrum, I can speak easily to the value, benefits, and peace that having a loved one on Hospice care can provide. I hope to draw value to home hospice care for the patient and family and help nurses assist and educate families with this beautiful end of life option.

What exactly does Hospice care do?

Hospice is "care designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure." The goal is to enable patients to be comfortable and free of pain so that they live each day as fully as possible. This typically takes place in the home, but can also be achieved in hospice respite care facilities and nursing homes and even in the hospital.

Who qualifies for Hospice Care?

The standard to qualify for hospice care is that the patient has been certified as being terminally ill by a physician and having a prognosis of 6 months or less if the disease runs its normal course. Private insurance, HMO's, Medicaid and Medicare all have a hospice benefit within the patient's plan document. There is usually an initial 6 month benefit period with subsequent 60 or 90 days periods when the patient is re-evaluated and determined to still be terminal with a limited life expectancy. Patients must agree that they will no longer be treating their diagnosis for curative purposes. The insurance companies will not cover therapies considered curative the patient is on palliative care benefits. Again, each case and facility has different nuances, but chemotherapy, blood transfusions, radiation (some exceptions are made), scans, x-rays, and IV nutrition (TPN) are not covered under hospice care.

The Hospice care team approach

The philosophy of hospice care is to support the emotional, social, medical and spiritual needs of the patient and family. This is achieved through a multidisciplinary approach. The nurse leads the team with the patient's doctor (if he/ she agrees to participate.) If not, the hospice organization has a medical director that can oversee the medical needs of the patient. The team consists of a social worker, clergy, volunteer coordinator, durable medical care provider, pharmacy, bereavement specialists, and when necessary dietary, physical, occupational, speech therapy.

The Role of Each Care Team Member

Since hospice care is a multidisciplinary care concept, each member of the care team is crucial to the overall care of the patient and family. The primary care members and their roles are as follows:

Nurse

The nurse is the central coordinator for all care the patient receives. She/he will meet with patients and families for an initial assessment and determine the patient's needs. The nurse keeps in constant contact with the physician to manage symptoms as they arise. This avoids the need for the patient to leave the home for a doctor visit. The nurse communicates with social work, pharmacy, bereavement counselors, dietary, physical therapy, home health aides, clergy, and volunteers to coordinate the care necessary to support the patient and family during this difficult stage of life. Nurses need to use their non-technical skills to ascertain the patient's disease progress. We, as nurses, use our senses to notice subtle changes in condition and ask specific questions to determine the patient's status. The nurse will decide the number of days per week that the patient should be seen for scheduled visits (this will change as the patient's condition changes) and is available by phone to answer patient and family questions. The nurse also makes an emotional investment and connects with the family and patient to guide them through the medical and emotional stages to come.

Social Worker

Under Hospice services, the social worker plays a key role in discussion and negotiation of care and equipment and support services with private insurance companies and HMO's. They will translate the Medicare coverage and communicate the need for reevaluation or additional services. Often times the social worker may be the first contact that the patient or family has with the Hospice program. They discuss what the program entails and what types of services are covered. The social worker will often coordinate with the bereavement team to work with patients and families during the hospice process as well as after the patient has passed.

Home Health Aide

Home health aides are an option for all patients under Hospice care. The number of hours per week is dependent on the needs of the patient and family as well as insurance coverage. Home health aides are trained in basic care and assistance with activities of daily living. They can change linens, give baths, assist with the commode or bedpan, assist in feeding the patient, many are able to do basic vital signs and most importantly communicate with the nurse any care or medical issues that may be new and require intervention.

Clergy

Hospice clergy will meet with patients and families of any faith or belief. They are trained and knowledgeable in all denominations and often have contacts with fellow clergy of particular faiths. If the patient wishes to have visits from their own spiritual leader Hospice clergy can make those arrangements. Patients and families who may have been distant from a religion or faith will commonly seek spiritual support or guidance during the end of their life. The clergy are also an integral part of the bereavement team during the terminal process and afterward for families. Another way that clergy is important is for the staff support. Hospice staff often become very close with their patients and families and need support as well. The clergy will also provide religious education to the care team when patients have specific religious preferences or beliefs.

Volunteers

The volunteers play a special role and can be one of the greatest and most beneficial services that Hospice care offers. These people are usually family members of a loved one who benefited from Hospice care or former healthcare service workers. They are caring people who are trained to handle emergencies and emotional interactions with patients and families. The volunteer coordinator and either nurse or social worker will work together to find a good match between the patient and volunteer. Once assigned, the can run errands for the family, or sit with the patient so the family can go out. They may come and read or play games or just sit and talk a few hours a week to give respite to the family. Very special bonds are created between volunteers and the patient and families they serve.

Pharmacy

Not all Hospices have a specialty pharmacy service. However, I do want to mention them as they are a fantastic resource to the medical staff and patients. Some hospices have contracts with pharmacies to provide all patients (upon nurse request and physician order) with an emergency box that contains a small supply of emergency as needed medications. Patients will often develop a new or worsening symptom during "off" hours. Since a nurse is on-call during these hours, he/she can guide the family on how to give whatever medication may be needed to alleviate symptoms. Such conditions are nausea, vomiting, difficulty breathing, pain, and agitation. This can prevent a call to the doctor during the night and a family member's trip to a pharmacy. These hospice affiliates also send meds by overnight and sometimes same day delivery service. The staff is experienced with medical end of life care issues and are an excellent resource to the nurse and doctor when patients have developed a symptom that is not responding to traditional treatment. Medications can be mixed into suppository form, topical application and liquid to meet the patient's need.

Bereavement

This service is so important to the Hospice philosophy. Patients and families begin the grieving process as the patient in going through several end of life stages. Having help and understanding with the emotions they are feeling and can expect is such a benefit and can help make the dying process less traumatic. The service is as helpful to the patient themselves as well as the family. Patients can often find closure with loved ones, help plan for their funeral arrangements, write a letter to be given to loved ones in the future, distribute meaningful gifts etc. Of course, after the patients passing, family members can have one-on-one counseling and/or join support groups to share their experiences and receive support from others in similar emotional and spiritual struggles.

Durable Medical Equipment

The nurse in collaboration with patient and family will determine the need for equipment that will help with activities of daily living such as hospital bed, wheelchair, oxygen (both portable and concentrators), commode, walkers, bedside tables etc. The equipment is delivered and set up by the DME company and picked up after the patients passing. These are services covered by the insurance company's Hospice benefit.

There are so many reasons why Hospice is a beautiful experience for patients and family members during the most difficult time of one's life. The amount of love and emotional reward that families can get from caring for their loved one is invaluable. When Hospice is involved, the amount of fear, uncertainty, and time-consuming tasks is reduced. The family members have time to focus on the love and emotional care of their family member.

I can not stress enough that the earlier Hospice is able to get involved in the patient's terminal timeline, the greater benefit they receive from the service, emotionally, spiritually, and medically with symptom management. There is a great degree of dignity in dying in your own home surrounded by loved ones, pets, belongings, familiar smells, etc. Physicians, nurses, social workers, family members and the patient themselves can request hospice services. Spreading the word and educating the community about experiences, truths, and myths regarding Hospice care can provide a terminal patient with a beautiful, individual, specialized and meaningful end of life experience.

There really is "No Place Like Home".

Sources:

Karen Ann Quinlan - Wikipedia

Medical Definition of Hospice care

Hospice eligibility requirements | National Hospice and Palliative Care Organization

Hospice & respite care | Medicare.gov

The Hospice Team - CaringInfo