CE Article: Hospice—End of Life But Not End of Care

Editor's Note: This article is no longer offered for CE credit. For a current list of CE-accredited courses visit ally.emsworld.com

Objectives

Upon conclusion of this course, students will be able to:

• Describe the history, mission, and demographics of hospice care;
• Define the roles and responsibilities of the EMS provider in hospice care;
• Identify equipment, medications, and other supplies for hospice care;
• Understand the hallmarks of the stages of death.

You respond to a single-family residence in a quiet neighborhood for a sick patient with difficulty breathing. At the door a family member directs you to a hospital-type bed with a frail elderly patient. An IV pole holds what appears to be nonparenteral nutrition running through an NG tube. A Foley catheter’s reservoir bag is visible. The patient is confused and agitated and pulling on the feeding tube; her respirations are irregular.  A caregiver touches your arm and says, “Help us! She’s a hospice patient.” 

Patients suffering from long-term debilitating diseases often receive comfort care (palliative care) or end-of-life care (hospice care). The two overlap and are related. Both types of care are provided by multidisciplinary teams, and both call for pain management and other measures to manage a patient’s symptoms. Both are provided in disparate locations, like hospitals, long-term care facilities, prisons, and private homes. 

However, there are differences.^1–3 With palliative care patients receive comfort measures and curative therapies.^2,4 For example, a patient with cancer receiving palliative care could receive pain management, nutrition assistance, physical rehabilitation, and chemotherapy. If there comes a point at which that patient is not expected to benefit from curative treatments and is expected to die within six months, they become candidates for hospice care. In hospice care measures to manage symptoms continue, but (futile) attempts at a cure would typically be stopped.^2,5 If a hospice patient elects to continue curative treatments, insurers like Medicare will not pay for them. 

Think about the difference between palliative care and hospice care as a paradigm shift: In palliative care comfort measures like pain management and oxygenation are provided, and a cure is possible and pursued. In hospice comfort measures are provided, but a cure is not (realistically) possible, and the foci become managing symptoms and maintaining the patient’s dignity.⁶ 

Dignity for the Dying

Hospices have been around since at least 1000 C.E., when they were established to care for soldiers sent to fight in Jerusalem and religious pilgrims traveling there.^7–9 The modern hospice movement in the U.S. grew out of changes in the way death was viewed and managed in the 1940s and ’50s.¹⁰ Prior to World War II, it was common for patients to die at home and their bodies to be tended to by family members. After the war access to better healthcare and a greater supply of hospital beds resulted in fewer people dying at home. Hospice expert Mary Ann Krisman-Scott postulated these changes included a growing lack of familiarity (and comfort) with death.¹⁰ 

Cicely Saunders is credited with starting the first modern hospice in 1967 in England and later bringing the concept to the attention of U.S. healthcare providers.^11,12 There are now more than 4,000 hospice organizations in the U.S.¹³ The majority (63%) are for-profit agencies. Approximately 1.5 million patients receive hospice services annually.¹⁴ 

Hospice care is a collaboration between healthcare providers, support staff, patients, and patients’ caregivers. This team approach provides patients with services like personal hygiene, medications, counseling, pastoral care, and other therapies. While most hospice patients die in their homes (Figure 1),⁵ hospice services can be provided in other settings, such as hospitals, nursing homes, and nontraditional locations like prisons.¹⁵ 

Fifty-nine percent of hospice patients are female.⁵ Eighty-three percent are white (Figure 2).⁵ Other races (and Hispanic/Latinx) are underrepresented. This lack of representation is something the healthcare community needs to address. A key strategy will be to assure that underrepresented populations are aware of hospice services, how to access them, and how to pay for them.² Medicare pays for most hospice care in the U.S.; many private insurers also provide coverage. 

At the Bedside

Once at the bedside crews have multiple tasks to accomplish immediately. You will need to begin an assessment, interact with the caregivers, and notify hospice that EMS has been called. Generally caregivers are told to call hospice in lieu of requesting EMS for the patient’s medical needs. However, there can be disagreements among caregivers about what is in the best interest of the patient. It is also possible that despite preparations by hospice, actually seeing the patient experience distress (like dyspnea, chest pain, or a seizure) is too much for the family to process, so they call EMS. 

Review all the patient’s medications and any pertinent forms. Hospice might have provided a box or kit to hold the medications, making them easy to locate. If it’s not presented quickly, check the refrigerator for this box. Important documents to review include a MOST (medical orders for scope of treatment) form, a do-not-resuscitate (DNR) order, and a healthcare power-of-attorney form. 

MOST forms allow seriously ill patients to pick specific treatments and/or interventions they want to receive (e.g., CPR, intubation, antibiotics, cardioversion). DNR forms specify that no CPR should be initiated in a cardiac arrest. Every hospice patient will have a valid DNR for your review. A healthcare power of attorney allows the patient to designate a person to make healthcare decisions for them if they’re incapacitated. That is always helpful and can be extremely useful if the designee is a domestic partner or family member other than the spouse. Local and state protocols will dictate your ability to honor these forms.

When treatment by EMS is needed, try to consult with the hospice staff (typically a registered nurse). If the patient needs something palliative, like suctioning an airway or flushing a gastric tube, it will likely be supported by hospice and in line with the patient’s wishes. It would also be helpful to do things like adjust oxygen delivery in the presence of dyspnea, administer medications to prevent or manage vomiting, and provide analgesia for pain. 

If a hospice nurse arrives on scene, it’s helpful if your agency has protocols that allow you to defer care decisions to them. This nurse has a deep and established relationship with the patient and can quickly contact their primary (hospice) healthcare provider. They also have access to a complete medical history and have discussed the patient’s wishes with them. 

Medications

You will likely find hospice patients are receiving several different medications. These can range from common drugs like acetaminophen and ondansetron to diuretics like furosemide or bumetanide and multiple narcotics. While it is typical for EMS agencies to administer narcotics for pain relief, hospice patients can be prescribed a lot more analgesia than you’re used to giving. Ascertain the typical dose of pain medicine your patient receives and adjust your dose accordingly, knowing they might need a high dose to obtain relief. Consider different medications to achieve the desired therapeutic effects. 

Patients who routinely take narcotics are more likely to become constipated, potentially developing an impaction. Remind these patients to drink fluids and consult with hospice about taking stool softeners or laxatives. Narcotics can also affect cognition and level of consciousness. Do not mistake an altered LOC caused by medications with something caused by a more acute and dangerous problem.

Home Equipment

Many hospice patients will at some point require oxygen. This is provided using an oxygen concentrator or standard portable cylinder. A concentrator requires electricity. Its motor draws air into the device where nitrogen is filtered out.¹⁶ The machine only stores a small amount of oxygen at any moment and thus needs to run continuously to assure an adequate supply for the patient. Oxygen cylinders do not require electricity, but they are useful for a finite time and must be replaced. 

You will also often see bedside commodes, IV poles, wheelchairs, and hospital-style beds. Patients who are ambulatory might be found in chairs. Those who are more debilitated will be confined to beds. Former dialysis and chemotherapy patients could have in-dwelling cannulation sites (e.g., PICC lines and AV shunts). It is unlikely you will need to cannulate these access points, but they are available if needed and your local protocol allows it.³ Each of these lines requires specialized training and care to avoid infection, embolism, and/or bleeding.

Stages of Death

Hospice patients will experience varied levels of disability as their terminal illness progresses. Altered levels of consciousness, memory loss, fatigue, poor appetite, visual disturbances, incontinence, bowel distress, and periods of agitation are a few of the signs and symptoms you may encounter. For the patient these will be frustrating and frightening. Caregivers can be equally troubled because they can feel helpless in the face of the patient’s discomfort. Be a kind and empathetic ear to everyone on scene—this may be the most important thing you can do on the call.

Both the patient and their caregivers are going through stages of death and grieving. Psychiatrist Elisabeth Kubler-Ross described these stages as denial, anger, bargaining, depression, and acceptance.¹⁷ These are not discrete linear phases. They can overlap and manifest out of order. When anger and frustration are directed at EMS, remember you are not necessarily the problem, but you need to be understanding (and safe). Listen to their frustrations and be empathetic.

Summary

Hospice patients and their families receive vital services from a wide variety of professionals. It is typical for the patient to have a registered nurse assigned as a primary contact. When you arrive at the home of a hospice patient, reach out to the hospice nurse. This will help you quickly obtain a medical history (including conditions, medications, and prognosis) and a chance to collaboratively form a plan that meets the patient’s needs and wishes. 

Caring for a hospice patient does not mean curative measures are forbidden, only that they are not intended. It does mean patients should receive palliative measures like clearing airways, caring for decubitus ulcers, and analgesia. It also means you should be prepared for patients suffering multiple serious health problems. 

Know your local protocols for honoring DNRs, MOST forms, and power-of-attorney documents. Being prepared can ease your stress level and help you work with patients and hospice. Your presence on the scene can provide the family with the tools to deal with a very difficult situation.  

Sidebar: Special Considerations

Hospice patients may have special needs based upon culture or religion. Ask caregivers if such special needs apply and try to accommodate their wishes. Sometimes there will be institutional demands. For example, if the hospice facility is in a prison, there may be security concerns, like how many people can be with the patient and whether the patient can be transported. Work with the authorities to learn and meet their requirements.

Sidebar: Needing Help  

Having hospice care can be a blessing for families. Hospice offers a host of wraparound services. It brings a coordinated team approach to direct medical care, counseling, and general support services. One area that is easy to let slip through the cracks is ensuring there is adequate support for stressed caregivers. 

Generally in-home caregivers are more likely to be female than male. Older caregivers spend more time providing care than younger ones. Stress felt by caregivers can manifest as depression and anxiety and cause physical sequalae like sleep disturbances.¹⁸ It would be helpful to confer with hospice staff when you see or hear caregivers overwhelmed by their circumstances. You may be the first person to notice a caregiver in a downward spiral. 

Lack of caregiver support correlates with increased stress. One of the most useful (and sometimes hard-to-find) services for patients and caregivers is respite care. Respite care is when caregivers get to take a break from their daily duties while someone else steps in to assume their role. Hospice will often have a system for providing this care on a limited basis. For example, a family might be able to have respite care staff take over for a few days every three months. If the hospice agency has a brick-and-mortar facility, the patient might be transported there to receive short-term respite services. Staff may also provide care in the patient’s home. At other times caregivers call upon family or friends to help. Either way, it’s crucial to realize caregivers are under stress and need breaks from time to time. 

References

1. Bonebrake D, Culver C, Call K, Ward-Smith P. Clinically differentiating palliative care and hospice. Clin J Oncol Nurs, 2010 Jun; 14(3): 273–5.

2. American Medical Association. Hospice and Palliative Care, www.ama-assn.org/sites/ama-assn.org/files/corp/media-browser/public/about-ama/councils/Council%20Reports/council-on-medical-service/issue-brief-hospice-palliative-care.pdf.

3. Barishansky RM. Palliative Care & EMS. EMS World, 2007 Sep; www.emsworld.com/article/10321662/palliative-care-ems.

4. National Institute on Aging. What Are Palliative Care and Hospice Care?, www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care.

5. National Hospice and Palliative Care Organization. NHCPO Facts and Figures, 2018 Edition, https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf.

6. National Hospice and Palliative Care Organization. Patients and Caregivers, www.nhpco.org/patients-and-caregivers/.

7. Perez J, Baldessarini RJ, Undurraga J, Sanchez-Moreno J. Origins of psychiatric hospitalization in medieval Spain. Psychiatr Q, 2012 Dec; 83(4): 419–30.

8. Sovereign Order of St. John of Jerusalem. Purpose & History, www.sosj-victoria.ca/the-order/purpose-history.

9. Britannica. Hospitallers, www.britannica.com/topic/Hospitallers.

10. Krisman-Scott MA. Origins of Hospice in the United States: The Care of the Dying, 1945–1975. J Hospice Palliative Nurs, 2003 Oct; 5(4): 205–10.

11. Clark D. Cicely Saunders—Founder of the Hospice Movement: Selected Letters 1959–1999. New York: Oxford University Press, 2002.

12. Richmond C. Dame Cicely Saunders. BMJ, 2005 Jul 23; 331(7,510): 238.

13. Centers for Disease Control and Prevention, National Center for Health Statistics. Hospice Care, www.cdc.gov/nchs/fastats/hospice-care.htm.

14. Centers for Disease Control and Prevention, National Center for Health Statistics. Long-term Care Providers and Services Users in the United States, 2015–2016. Vital and Health Statistics, 2019 Feb; 3(43); www.cdc.gov/nchs/data/series/sr_03/sr03_43-508.pdf.

15. Head B. The Transforming Power of Prison Hospice: Changing the Culture of Incarceration One Life at a Time. J Hospice Palliative Nurs, 2005 Nov; 7(6): 360–1.

16. U.S. Food and Drug Administration. Pulse Oximeters and Oxygen Concentrators: What to Know About At-Home Oxygen Therapy, www.fda.gov/consumers/consumer-updates/pulse-oximeters-and-oxygen-concentrators-what-know-about-home-oxygen-therapy.

17. Kubler-Ross E, Kessler D. On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. New York, NY: Scribner, 2005.

18. Phillips AC, Gallagher S, Hunt K, Der G, Carroll D. Symptoms of depression in non-routine caregivers: The role of caregiver strain and burden. Brit J Clin Psych, 2008 Nov; 48(Pt 4): 335–46.

Sandy Hunter, PhD, NRP, is an instructor in the Department of Emergency Medical Science at Wake Technical College in Raleigh, N.C.