Providing dignity and comfort to our final moments

Dying is part of life, and one day — we're all going to die. Even though death is inevitable most of us have a hard time accepting that life is temporary. Dying is painful for some, but hospices can help provide comfort care that lessens suffering in the dying process.

The idea of hospices has been around since the middle ages. Hospices were once a place for shelter and respite for the ill traveler on their long journeys. A physician named Cicely Saunders first applied for hospice in 1948 when caring for her terminally ill patients. She then went on to form the first known modern hospice in a London suburb — The St. Christopher's Hospice.

Today's hospice care is a solid institution in the United States and worldwide. Instead of denying death, hospices nurture an environment where dying is acceptable and is understood as a natural part of life. As a result, hospices can help create a rich experience for the dying and the loved ones who remain at the bedside.

The idea of hospice care was introduced in the United States in the 1960s. To a great extent influenced by Dr. Elisabeth Kubler-Ross work. Her book, On Death and Dying, contains more than 500 interviews with dying patients. Her breakthrough work identified the five stages of death . Kubler-Ross's work becomes internationally known for her plea for home palliative care instead of aggressive hospitalizations and treatments. In addition, she advocated for the patient's right to choose and participate in their end-of-life directives.

For a complete chronology of events shaping the history of hospice care in the United States, visit: National Hospice and Palliative care Organization

How Hospices operate

In the United States, hospices are funded mainly by government programs such as Medicare,

and the sponsorship of charitable organizations and private donors. Hospices are usually small organizations, but some have grown into entire franchise corporations. The hospice business has grown substantially over the past 20 years, becoming a highly competitive market.

One of the hospice's main priorities is monitoring and determining patients' eligibility. Patients are evaluated according to a physician's diagnosis and assessment. Patients are usually referred to hospices by their private physician, provided a family decision is made to enter hospice. Eligible patients must have an estimated three months of life expectancy.

Patients will be discharged if they remain living or show health improvements after three months after being admitted. However, they can re-enter for another three-month period at a further date. An algorithm is used to evaluate patients' eligibility secondary to their health condition. Nurses, social workers, and chaplains hold regular meetings to discuss patients' eligibility. These eligibility parameters may vary from hospice to hospice and under state guidelines.

Hospices work under a tight set of rules required by the government and state. Scrutiny is high for handling death and dying, and hospices go to great lengths to follow these rules and regulations. Noncompliance could cost a hospice their license. So, a central part of what hospices do is ensure their admissions and discharges comply with the rules.

A patient's cause of death can be varied; cancer, however, is at the top of the list. Each condition holds its own set of parameters that can discharge or keep a patient in the program. Patients usually have such an excellent response to hospice care they improve and gain a few more months of life after being admitted. Sometimes these patients are discharged home but might come back shortly as their health status might change.

The day-to-day work of a hospice nurse

Hospices work by using teams. A team usually consists of:

  1. Registered Nurse,
  2. social worker,
  3. chaplain,
  4. hospice aids,
  5. volunteers.

A hospice nurse is an essential component of the hospice team. Hospice nurses drive a fair amount of miles to meet their patients. It is not uncommon to spend nearly two hours going on any given day (not including job commute). Nurses can have a 7–14 patient load. They might perform 3–6 visits a day, depending on the length of a stay and the patient's location.

Nurses mostly see their patients in their homes, but other locations such as nursing homes and skilled facilities are also common. Nurses carry a handbag packed with a laptop or pad, nursing supplies, gloves, vital sign kit, bandages, and other items. RN'a task, among many others, is to keep patients supplied with diapers, cleaning agents, applications, medications, and other essentials. They can order these supplies directly from a distributor, provided the patient's insurance covers the items. They can also arrange for the delivery of durable medical goods such as hospital beds, bedside commodes, and others.

Some common tasks of a hospice RN

  • Charting
  • Visiting patients
  • Recruit other members of the team
  • Discuss and present patient's cases to hospice staff
  • Patient care (most common)
  • Pain assessment
  • Delivering comfort kit
  • Coping assessments
  • Change in condition
  • Wound care
  • Replenish patient supplies
  • Plan of care changes
  • Medication reconciliation
  • Foley placement, removal
  • Draw specimen
  • Clean and prepare the body for the mortuary
  • Time of death

Charting

Charting for hospice is extensive, and it might take 30–45 minutes after each visit. Charting is vital in hospice because a patient's status can change rapidly. Hospices will provide a laptop or tablet for their nurses. Some nurses chart after each visit, and others prefer charting all visits at the end of the day.

Patient care

Even though patients are very ill in most cases, they might require limited care overall. Hospice patients receive palliative care only. Visits can be just a follow-up or touch base and monitor the patient's progress. Other times extensive care may be needed. All visits require a set of vitals, head-to-toe assessment, and charting.

It is common to change medications or dosages or add new ones. That will imply calling the MD and writing down phone orders. Checking for impactions and performing necessary desimpactions are common tasks for a hospice RN. Patients usually suffer from extreme constipation due to the large amounts of opioids they take regularly.

Wound care is quite common. However, wounds in hospice are also palliative in nature. Therefore, nurses are mostly trying to keep things from getting worse. However, some patients might heal from their wounds; others will not due to weakness or ravaged immune system.

Planning is a big concern. As patients' conditions deteriorate rapidly, nurses should always anticipate what will be needed in the future and stay a step ahead. Avoiding pain and anxiety is key for hospice nurses. Patients and families may need steady morphine or Ativan increases. Patients may become highly restless; family members might need emotional support or be educated about what they see or are about to see. Patients might have deteriorating physical conditions requiring constant care plan modification. Sometimes nurses will call for team help when tasks fall outside their job description.

Family education

Educational skills are a big part of a hospice nurse's job. Even though nurses might visit patients 2–3 times a week, it is the family who is often at the bedside. Sometimes the family will hire help. The role of the RN is to supervise the care and educate the team caring for a given patient. In addition, the RN will leave instructions on how to provide medication and call the RN or hospice when needed.

Comfort care kit

Hospices provide a basic comfort care kit with every admission. This may vary for different hospices but is common to find: Liquid morphine; Ativan liquid or tab; Zofran; Atropine; Senna; and suppositories. Other common medications in a hospice arsenal are Haldol and Phenobarbital, used for severe agitation and restlessness.

Time of Death

Patients may expire at any time. Sometimes the RN will be present, but at other times there will be a call letting you know that one of your patients has passed. Usually, most patients expire at night. In that case, a resource RN working off-hours will take care of the time of death. The time of death consists in finalizing all services. The first action to be taken is to pronounce the deceased patient. Next, the RN will check all possible vital signs (or the lack thereof) by listening to lung sounds, chest rise, pupil dilation, carotid pulse, and temperature for at least 2 minutes. Once no vital signs are found, the RN will call the MD and get the pronouncement from the physician based on the RN assessment.

Then communicate to the family that their loved one has expired. After receiving an order from the physician, the RN will call the city (this may vary from state to state), usually to the coroner's office, and report the death. The coroner will ask a few questions and then give you a number; this number is to be noted in your final time of death charting. Finally, ask the family when they want to start the funeral services. Some families like to keep the body for a few more hours; others want to get mortuary benefits ASAP. The RN will then clean the body, call the mortuary, and transport it.

“Death is not the problem at all, dying is what’s is hard

Other considerations

If you are considering working as a hospice nurse, you should do some soul-searching. Ask yourself why do you want to become a hospice RN? Hospice involves a particular kind of nursing skills. It takes a particular type of individual to fit in with the hospice culture and its distinct personality. Usually, nurses that work in hospices have been working in hospices for a long time. Hospice nursing is unique because it is unlike any other nursing practice. A hospice set of rules only apply to hospice hence it is a self-contained environment, and little is shared with other areas of nursing. Once you become a hospice nurse is unlikely you'll return to acute care or any other type of nursing. It might as well be a lifetime commitment.

Collaborative care

One should keep in mind that patients sometimes still keep their family physicians while they are in hospice. It is a good practice to get in touch with them and clarify what role they want to play while their patient is in hospice care. This step can prevent confusion while there might be collaborative care in some cases. Some physicians want to be very involved in the care, others only want to be notified, and others will need no communication at all.

Rewarding and stress-free

Hospice work is extremely rewarding. Families of patients are for the most part endeared to the ones caring for their dying. Family members will never forget you and the moments you were caring for their loved ones. Nursing for hospice is relatively stress-free. Once you get used to death and dying, your work becomes a natural task. The peaceful death of a patient is the goal of a hospice nurse. Stress in health care is due in great part to a fight to save someone's life — in hospice we are encouraging the letting go of everything.

Emotional toll

Eventually, the emotional toll of hospice can catch you off guard. Nurses go day in and day out handling strong emotions and seeing patients die. They process emotional outbursts from loved ones and see people they have become quite close — pass away. It is almost impossible to completely insulate yourself from these emotions. There will be moments when you'll feel the pain and the job you're actually doing becomes very raw and visible. Hospice can be overwhelming at times and create compassion fatigue.

Nursing and hospices

Keep in mind that hospices even though are in the medical field they, in great part, have a social workers' frame of mind. They are different from hospitals, clinics, rehab, or any other health institution. The direction of hospices is guided by a social worker and chaplain's agenda more than a medical one. Even though large hospices have a complete team of nurses and doctors. They still operate much under the guise of a social worker structure.

Hospice resources

Five Wishes is used in all 50 states and in countries around the world. It meets the legal requirements for an advance directive in 42 U.S. states and the District of Columbia. In the other eight states, your completed Five Wishes can be attached to your state's required form.

Image credit: Pixabay

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Leonardo Del Toro

Leonardo Del Toro

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