Bringing dignity to a person’s most difficult journey
Everybody dies and dying is part of life. In fact the only sure thing in this world is that one day – we’re all going to die. Even though dying is inevitable most of us have a real hard time accepting our unavoidable future. Dying can also be painful for some but hospices can help by providing comfort measures that attenuate suffering during the dying process.
Fortunately, the idea that one could die comfortably and with dignity have existed for a long time, and today’s hospice care is a solid institution in the United States and across the world. Instead of avoiding and denying death; hospices provide an environment where death and dying is accepted as a natural part of life. Hospices can transform a difficult journey into – a rich experience for the dying and their loved ones.
The idea of hospice have been around since the middle ages. Hospices where a place for shelter and respite for the ill traveler on their long journeys. A physician named Cicely Saunders first applied the name hospice in 1948 when caring for her terminally ill patients. She then went on to create the first known modern hospice in a London suburb – The St. Christopher’s Hospice.
The idea of hospice care was introduced in the United States in the 1960’s. To a great extent influenced by Dr. Elisabeth Kubler-Ross work. Her book entitled: On Death and Dying, contained more than 500 interviews with dying patients. Her breakthrough work identified for the first time, the five stages of death. Kubler-Ross’s work becomes internationally known by her plea for home palliative care instead of aggressive hospitalizations and treatments. Advocating for the patient’s rights to choose and participate on their end of life decisions.
For a complete chronology of events helping to shape 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 mostly funded by government programs such as Medicare, and the sponsorship of charitable organizations and/or private donors. Hospices are usually small organizations but some have grown into full franchise corporations. Hospice business have grown substantially in the past 20 years creating a highly competitive market. 
Hospices main priorities are to monitor and determine patient’s eligibility. Patients are evaluated according to their diagnosis and a physician’s assessment. Patients are usually refereed to hospices by their physician and the family decision to enter the program. Eligible patients must have an estimated three months of life expectancy.
Patients will be discharged if they remain living after the first three months. 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 meeting to discuss patient’s eligibility. These eligibility parameters may vary from hospice to hospice.
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 the strict rules and regulations. Non compliance could cost a hospice’s license. So, a central part of what hospices do is to make sure their admissions and discharges are compliant.
Patient’s cause of death can be varied, cancer however is at the top of the list. Each condition hold its own set of parameters that can discharge, or keep a patient in the program. Patients usually have such a good response to hospice care, they actually improve and gain a few more months of life after being admitted. Some times these patients are discharged home, but might come back in a near future as their health deteriorates.
The day to day work of a hospice nurse
Hospices work by using teams. A team usually consists of: Registered Nurse, social worker, chaplain, hospice aids, and volunteers. A hospice nurse is an important component for the hospice team. Hospice nurses drive a fair amount of miles to meet their patients. It is not uncommon to spend close to two hours driving at 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 visit and patient’s location.
Nurses mostly see their patients at their own homes but other locations such as nursing homes and skilled facilities are also common. Nurses carry with them a hand bag packed with supplies. Laptop or pad, nursing supplies, gloves, vital sign kit, bandages to name a few. Another hospice RN task is to keep patients supplied with diapers, cleaning agents, bandages, medications and whatever item they need. They can order theses supplies directly from a distributor provided the items are covered by the patient’s insurance. They can also arrange for delivery of durable medical goods such as a hospital bed, bedside commode and others.
Some common task of a hospice RN
- Visiting patients
- Activate other members of the team
- Discuss and present patient’s cases with hospice
- Patient care (most common)
- Pain assessment
- Delivering comfort kit
- Coping assessment
- Change in condition
- Wound care
- Replenish patient supplies
- Plan of care changes
- Medication reconciliation
- Foley placement, removal
- Draw specimen
- Clean and prepare body to mortuary
- Time of death
Charting for hospice can be quite extensive and it might take up to 30 – 45 minutes after each visit. Charting is important in hospice because patient’s status can change rapidly. Hospices usually provide a laptop or tablet for their nurses. Some nurses chart after each visit, and others prefer charting all at ounce at the end of the day.
Even though in most cases patients are very ill, they might require limited care overall. Hospice patients receive palliative care only. Visits can be just a follow up or to touch basis 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 disimpactions if necessary are very common tasks for a hospice RN. Patients usually suffer from extreme constipation due to large amounts of opioids they take on a regular basis.
Wound care is quite common. However, wounds in hospice is also palliative in nature. 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 ahead is a big concern. As patient’s conditions deteriorate rapidly, nurses should always anticipate what will be needed in the future and stay a step ahead. Avoiding pain and anxiety are key for a hospice nurse. Patients and family may need steady morphine or ativan increases. Patients may become extremely 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 simply call the team for the help when tasks fall outside of the nurses job description.
Educational skills are a big part a hospice nurse tool box. Even though nurses might visit patients 2 – 3 times a week, is the family who is often at the bed side. 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. The RN will leave instructions on how to give medication and to call the RN or hospice when needed.
Comfort care kit
Hospices provides 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 medication in a hospice arsenal are Haldol and Phenobarbital, used for severe agitation and restlessness.
Time of Death
Patients may expire at anytime. Sometimes the RN will be present but at other times there will be a call letting you know that one of your patients have 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 consist in finalizing all services. The first action to be taken is to pronounce the patient deceased. The RN will check all possible vital signs (or the lack thereof) by listening to lung sounds, chest rise, pupil dilatation, carotid pulse, temperature for at least 2 minutes. Ounce no vital signs are found, the RN will call the MD and get the pronouncement from the physician based on the RN assessment. Finally communicate to the family that their loved one has expired. After receiving a 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 what wish to do with the remains of their loved one. Sometimes they intend to keep the body for a few more hours other times they want to get started right away with mortuary services. The RN will then clean the body, call the mortuary and get it ready for the transport.
If you are thinking about working as a hospice nurse you should first do some soul searching. Ask yourself why do you want to become a hospice RN? Hospice involves a peculiar kind of nursing skills. It takes a particular kind of individual to fit in a hospice. It also takes a particular individual to fit in with the culture of hospice 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 kind of nursing practice. Hospice set of rules only apply to hospice, hence it is a self contained environment and little is shared with other areas of nursing. Ounce 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.
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 a collaborative care in some cases. Some physicians want to be very involved in the care, others only want to be notified, others will need not 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 one. Nursing for hospice is relatively stress free. Ounce you get used to death and dying, your work becomes a natural and honorable 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.
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 outburst 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 what the job you’re actually doing, becomes very raw and visible. Hospice can be overwhelming at times; it is part of the job. We are all humans.
Nursing and hospices
Keep in mind that hospices even though are in a medical field they belong in great part to the social workers realm. They are different than hospitals, clinics, rehabs, or any other health institution. The direction of hospices are 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 frame of mind.
- Hospice directory
- NHPCO Facts and Figures: Hospice care in America
- Personality and communications skills as a predictor of hospice nurse performance
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