This CE activity is approved by EMS World Magazine, an organization accredited by the Continuing Education Coordinating Board for Emergency Medical Services (CECBEMS) for 1 CEU. To take the CE test that accompanies this article, go to www.rapidce.com to take the test and immediately receive your CE credit. Questions? E-mail editor@EMSWorld.com.
- Understand the differences between a do-not-resuscitate order, a living will and a power of attorney
- Understand treatment limitations of a DNR order
- Learn treatment options available for hospice and palliative care patients
- Discuss care for the body following death
Click here to access a 20-question review test for your training purposes.
Med-2 arrives at a skilled nursing facility at 2330 for a patient short of breath. The crew is greeted by a nurse, who directs them to the patient's room in the assisted-living side of the facility. The 65-year- old female moved in this past week after deciding she could no longer live independently. The nurse explains that the patient's shortness of breath has been worsening for the past six hours and has been treated with oxygen. She did not call 9-1-1 earlier because the patient has signed a do-not-resuscitate order; however, the patient's daughter arrived a little while ago and immediately requested an ambulance.
When the crew walks in, they see a well-dressed 65-year-old female on the edge of her bed, leaning forward in a tripod position, with a nasal cannula in place. Crackles can be heard from across the room, and the patient's lips look dusky. Her daughter says her mother has some heart trouble, but is otherwise healthy.
As the crew open their bags and turn on a monitor, the nurse says, "You cannot do all that. She is a DNR." Is the nurse right? Does the DNR prevent the crew from intervening? What can they do for a patient with a DNR? Are there limitations?
Following the development of CPR in the 1960s, all patients who experienced cardiac arrest received CPR. As the science around CPR progressed, ethicists challenged the ethical and moral necessity of prolonging the pain and suffering of terminally ill patients. This led to development of do-not-resuscitate orders, which first appeared in the mid-1970s.1 Following the pressure of ethicists, the American Medical Association (AMA) stated that CPR was not indicated in certain situations, specifically in cases of illness where death is an expected result.
Always contentious, resuscitation as a medical term means the procedures that attempt to restore cardiac and pulmonary function in an individual who has experienced cardiac or pulmonary arrest. CPR is the most commonly used term for resuscitation. When a patient has a do-not-resuscitate order, that order speaks specifically to performance of CPR. Traditionally, only patients with terminal illness, such as metastatic cancer, could obtain a DNR.
True to its word, a DNR order does not impact any medical care, assessment, diagnostic testing or intervention before a patient experiences cardiopulmonary arrest. As medicine has evolved, however, groups of patients have been identified who are nearing or at the end of life for whom the treatment focus becomes creating a comfortable end of life, rather than life preservation.2
The World Health Organization has defined palliative care as: "the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families."3
Today, hundreds of thousands of people have DNR orders, and most of them live independently and work and interact daily with society. These patients may become extremely sick from other causes, and it is important to remember they still have a large variety of treatment options available.2 Further, roughly a half-million U.S. patients are receiving hospice and palliative care benefits through Medicare and Medicaid.3
Sixty percent of Americans die at home, yet as few as 35% actually want to die there.3 As a result, 9-1-1 is often activated at some point in the dying process, even when patients have some sort of advance directive or are in palliative care. When interacting with these patients, it is important to know what treatments are available and what to avoid.
A DNR order is a physician's signed order to forego the performance of CPR in the event of cardiac arrest. It is "an advance directive to be followed when a person's heart or breathing stops and [the patient is] unable to communicate their wishes to refuse treatment" that could prevent them dying.4 Each state has slightly different rules regarding what specific interventions can and cannot be performed on patients with DNR orders. It is the responsibility of every EMT to know the laws governing his or her state.
A living will is "a document that allows a person to explain in writing which medical treatment he does or does not want during a terminal illness. A living will takes effect only when the patient is incapacitated and can no longer express his wishes." The will states which medical treatments prevent death and without the patient's life being artificially prolonged by various medical procedures.4
Healthcare power of attorney is "a legal document that allows an individual to designate another person to make medical decisions for him when he cannot make decisions for himself." These decisions include consenting to or refusing medical treatments, procedures or services, and discontinuation of life support.4
WHEN DOES A DNR TAKE EFFECT?
Every state has its own rules and regulations that dictate the specific wording around a DNR order. Wisconsin's rules fall under State Statute Chapter 154 and, like most states, dictate that the rules of a DNR have no bearing on patient care until a patient is in respiratory failure, respiratory arrest or cardiac arrest.5
A DNR order does not alter or change the current medical practice for any illness or injury, nor does it change the standard medical practices or ethics of care. Further, a DNR does not streamline death, but rather dictates that when a patient suffers a respiratory or cardiac arrest, they wish for "comfort care" only. To clearly emphasize this, in 1983, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research stated that a DNR policy should ensure that the order to not resuscitate has no implications for any other treatment decisions. The American Medical Association issued a position paper in 1991 clearly stating that a DNR order should not influence other therapeutic interventions that may be appropriate for the patient up to the point of cardiopulmonary arrest.1
THE GREY AREAS
Med-9 has arrived on scene at an adult daycare center for someone choking. When they walk into the dining room, the 44-year-old female, who is slightly obese and has Down syndrome, is lying unresponsive on the floor with a nurse attempting ventilations with a pocket-mask. She tells you the patient began choking on a grape and abdominal thrusts were unsuccessful. She has been trying to ventilate for a minute now, but cannot open the airway. She also states that the patient has a DNR order. Can you clear the airway and ventilate this patient?
DNRs are often taken to imply a patient only wants comfort care or desires less aggressive care. Dr. Marianne Tanabe discusses several studies in her paper on DNR care.1 In one study, physicians were found less likely to initiate diagnostic care and interventions such as blood transfusions to patients with DNRs. Another study found patients with DNRs were more likely to die than patients with like illnesses but without DNR orders.1
A DNR does not suggest that patients wish for comfort care only. When time permits, ask the patient or his/her power of attorney about specific interventions. Therapeutic interventions may be clearly indicated that can allow the patient to return to a healthy functioning part of society. Consider the choking patient. She is not near death from a natural cause, and there is a clearly correctable situation. It is appropriate to relieve the foreign body airway obstruction and try to ventilate the patient. If the patient goes into cardiac arrest, the DNR would be enforced. When in doubt, do what is in the patient's best interest and contact medical control.
Robin L. Kruse, et al., found that nursing home patients with DNRs are less likely to be admitted to hospitals for respiratory infections than those without DNR orders.6 She says this suggests that DNRs result in undocumented care limitations unrelated to resuscitation.
Drs. Mary Catherin Beach and R. Sean Morrison found that physicians were less likely to provide invasive and noninvasive testing and treatments when patients had a DNR order, even when the interventions and treatments were unrelated to CPR.7
It is worrisome that these examples exist, as statutes and position papers have tried to clearly define that a DNR does not limit patient care. While every state has different not-allowed interventions for patients with DNRs, there are some consistencies. Iowa, Massachusetts and New Mexico all prohibit the following interventions for patients with DNR orders:8,9
- External chest compressions
- Artificial airway placement (dual lumen, endotracheal tube, laryngeal mask airway)
- Cardiac drugs that sustain life
- Artificial respirations.
Not surprisingly, many states do not prohibit cardiac pacing or cardioversion, though some, like New Mexico, do prohibit pacing.9
Consider the following case: A 72-year-old male calls 9-1-1 feeling weak. Upon arrival, the EMS crew places the patient on oxygen and obtains vital signs. His pulse is 172, respirations 18, blood pressure 90/62, skin slightly pale, and he is awake and oriented but anxious. He is placed on a cardiac monitor, which shows ventricular tachycardia. The paramedic notes that the patient is wearing a state DNR bracelet. What care is appropriate? Both cardiac medications and synchronized cardioversion may be indicated for this patient. Since he is not in cardiac or respiratory arrest, his DNR status has no bearing on his current condition, and both can be utilized.
Remember, a DNR only takes effect once the patient is in an arrest state. An appropriate course of action in this situation would be to let the patient (or his power of attorney) determine which intervention would be OK. Alternatively, discuss the case with medical control.
When patients are not in respiratory or cardiac arrest, a stand-alone DNR order has no impact on the care EMS providers administer; however, a living will can greatly impact the care rendered. A living will is a legal document completed by the patient with the guidance of a physician that dictates specifically what treatments the patient does and does not wish to have performed. For example, a living will commonly states that a patient does not want a feeding tube or to be maintained on a ventilator if they are in an irreversible condition. Living wills go into effect when patients lose their ability to communicate for themselves and make their own decisions. Patients often complete living wills before they become ill or injured; it is their way to express their long-term care desires before something happens. Patients who have been diagnosed with a terminal illness and only have a brief time to live often have their care shifted from disease-curing to quality of life preservation. This shift is called hospice or palliative care.
As mentioned previously, nearly half a million Americans are receiving federal aid to pay for hospice and palliative care. Hospice care and palliative care are essentially synonymous. Hospice patients are at the end of life, which is defined as the period when healthcare providers do not expect an individual to live for more than six months.10 Palliative care focuses on providing comfort and symptom relief for terminally ill patients, and no effort is made to correct the illness. During palliative care, the intent is not to successfully treat a disease or illness, but rather to remove unnecessary and ineffective treatments and focus on optimizing patient comfort, function and quality of life remaining.11 The top reasons patients decide to enter hospice care are: cancer (top overall), chronic obstructive pulmonary disorder (COPD), congestive heart failure (CHF), dementia, stroke, HIV/AIDS, renal failure and liver failure.3 According to a discussion on how different cultures accept death and the dying process, Caucasian populations are more accepting of death and hospice care than African-American, Hispanic and Asian populations.3
EMS providers interact with hospice patients in a few ways. First, hospice patients often require transport via ambulance to their home or an in-patient hospice facility to complete their end of life process. Second, when there is a sudden decline or change in the patient's condition and the family is unsure how to handle it, they call 9-1-1. Third is for an unrelated medical problem or complication--a cancer patient is hypovolemic from influenza, etc. Finally, families sometimes become uncomfortable at the moment of death and request medical aid. When caring for a hospice patient, both the patient's and family's needs must be remembered. EMS providers can do a lot by providing pain and symptom relief, emotional support and being there at the end of life.
Pain is the most common symptom for patients receiving palliative care.3 For nearly 50% of patients, the pain is somatic in origin. Somatic pain is deep pain that is well defined and can be localized to one place. Visceral pain, experienced 25% of the time, tends to be more of a dull ache, and it is difficult for patients to pinpoint an exact location. Visceral pain is sometimes also described as referred pain. Finally, another quarter of patients experience neuropathic pain, which results from nervous system damage and may be described as burning, itching, stabbing, or "pins and needles."3
All palliative care patients are on some sort of pain management regime, but breakthrough pain, or pain that persists despite regular pain medications, is fairly common. More than 75% of cancer patients in hospice experience breakthrough pain. Other causes of pain include:3
- Headache from increasing ICP caused by tumors
- Bone pain (most common form of cancer pain)
- Muscle spasms near lesions
- Nerve compression
- Chest pain from tumor invasion.
As pain management begins, maintain clear and open communication with the patient and his/her family. Even unresponsive patients may be able to hear, as hearing is the last sense lost as coma develops. Involve the family; ask them to explain what signs the patient displays that signal pain and relief.11 Warn the patient and family about moves and procedures performed by EMS and how they might cause discomfort or relief. For example, prior to departing from the hospital to home, explain how potholes make the road uncomfortable, but you're pretreating that discomfort by providing extra padding on the cot and having the sending hospital staff administer analgesia. Determine and respect any cultural and family beliefs and values placed on the end of life process and perceived pain. Many cultures feel some pain is acceptable, while others may want there to be no sense of pain at all.11
Simple pain relief strategies include placing the patient in a position of comfort, providing extra padding, oxygen administration, and creating a quiet non-stimulating environment.
For ALS providers, unless specifically contraindicated, it is always acceptable to administer intramuscular or intravenous analgesics. Studies have shown that administering opiates and other analgesic drugs does not bring death about sooner. Fears that even a traditionally therapeutic opiate dose could exacerbate respiratory depression and bring an earlier death have been disproven.11
Always follow local protocols and consider discussing dosing regimens for aggressive pain management with medical control. There is no one best way to approach drug administration to patients with pain in hospice and palliative care. The overall goal needs to be pain relief. During the final 12 hours of life, patients have received anywhere from 1 to 698 mg of morphine, and up to 450 mg morphine in the final four hours of life.11 We do not suggest administering this much morphine during EMS care, but rather want these numbers to raise awareness that, particularly during transport to home or a hospice facility, pain levels can be quite high, and aggressive pain management is often warranted.
When traditional pain control methods, including higher doses of analgesics, cannot bring adequate pain relief, or when palliative care patients are experiencing extreme agitation or psychological distress, palliative sedation is a reasonable treatment option. Palliative sedation, sometimes referred to as total or terminal sedation, can be used to decrease the patient's awareness of distressing symptoms (e.g., respiratory distress) that cannot be controlled by other means, and should only be performed with the guidance of medical control. Palliative sedation is considered when the following is true: 1) aggressive efforts have failed to provide symptom relief; 2) other invasive and noninvasive treatments could not or are unlikely to provide relief; 3) additional therapies are associated with excessive/unacceptable morbidity or are unlikely to provide relief in a reasonable timeframe. The most common reasons for palliative sedation are anxiety/psychological distress, dyspnea and agitation.11
Many patients, particularly those with COPD and heart failure, experience shortness of breath during the dying process. Other causes of dyspnea include:3
- Pleural effusion
- Pericardial effusion
- Pericardial tamponade
- Superior vena cava syndrome
Relieving a patient's respiratory distress will decrease anxiety for both the patient and family, and make the patient more comfortable. Simple treatments include positioning the patient to ease breathing, applying oxygen and suctioning the airway. Nebulized albuterol can relieve wheezing and bronchoconstriction. Diuretics and nitroglycerin can help relieve pulmonary edema. Continuous positive airway pressure (CPAP) is a noninvasive tool that can provide ventilatory support without providing artificial respirations. CPAP is a reasonable treatment option for palliative care patients in worsening respiratory distress, but discuss the intervention with family and medical control prior to use.
GI SYMPTOM MANAGEMENT
Nausea and vomiting are common complaints of patients experiencing the dying process.3 When resources are available, treat nausea with antiemetic drugs, particularly if the patient is prone to motion sickness and will be transported. Diarrhea and urinary incontinence may be seen as well. Keeping the patient dry and clean is very important to maintaining comfort and dignity.12 Take extra time to make sure a patient is not transported with soiled undergarments or bedding. If the patient has a Foley cathether, make sure to not pull on it or allow it to become caught on objects while moving the patient--this would clearly cause discomfort.
Families often wish to be with the dying patient 24 hours a day.12 Consider allowing them to accompany you during transport as is appropriate and allowed by your organization's rules. "Sentimental Journey" is a program developed by EMS cartoonist and author Steve Berry and his colleagues in Colorado, where their service helps to provide patients with one last travel outside of their hospice center.13 For more information, see the sidebar on this page and www.iamnotanambulancedriver.com.
While a special trip via ambulance is not always practical, if possible, stop outside to let patients enjoy the sun before taking them into their home, or stop at a park to let them see the trees one last time. Work with the patient's family to determine how a transport can be made special.
Squad 54 was called to a suburban home for injuries from a fall. The two EMTs were surprised when they discovered their patient was an 82-year-old female who had fallen from her bed and was lying on the floor in obvious pain, with her left leg shortened and rotated outward. The distraught family explained that she was brought home under hospice care and rolled over and out of bed when nobody was looking. The family could not get her back into bed without her screaming in pain, and they are worried about her being transported out of the home.
When interventions must be provided, explain how they will not prolong suffering or shorten life, but how they can make the patient much more comfortable.
The Squad 54 crew explained they were going to evaluate the patient's legs because she had symptoms consistent with a hip fracture. The family did not want her taken to the hospital, which would normally be required with a patient having known injuries. The crew contacted their medical control physician and explained they had padded the patient's hip and placed her in bed, and that CSM was intact, but the left leg was shorter. They also explained that the patient was bedridden prior to the injury, and the family did not wish for an ED evaluation or hip repair at this time. A hospice nurse was due to arrive within an hour, and the medical control physician agreed to allow the patient to remain at home with the splint in place and requested one of the EMTs phone the hospice physician to arrange for the patient's pain medicines to be adjusted. By working with the family, this crew was able to meet the wishes of both the patient and her family.
WHEN TO DISREGARD A DNR ORDER
At times, there may be reason to disregard a DNR order, other advance directives or even palliative care measures. A DNR can be disregarded whenever the patients themselves state they do not want it honored, or when there is damage or signs of tampering with a DNR bracelet, necklace, band or paperwork. Further, if a patient is suspected or known to be pregnant, a DNR cannot be honored.9,14
When abuse is suspected from a caregiver (family or medical), disregard existing living wills and DNRs and provide the patient with complete care. Let legal authorities determine the extent of abuse and if the legal documents resulted from abuse. For example, an adult child could be abusing a parent and have forced or coerced them to sign DNR under duress. For more information on geriatric abuse, see the July edition of EMS Magazine.
If you are around for the end of a patient's life, remember that the emergency is over, and it is more important to care for everyone present than to try to quickly put the ambulance back into service. Take time to console the family, using direct words such as dead and deceased; avoid vague terms like "passed on" or "no longer with us" to describe the patient.
When allowed by local protocols, remove any medical equipment attached to the patient, such as cardiac monitors, oxygen and IV fluids. Consider placing a small rolled towel or washcloth in the deceased patient's hands. This will allow them to remain in a "cupping" position as rigor mortis develops so that family members can hold the deceased's hands if they wish. Close the patient's eyelids if they are open.
If the patient is in a bed, draw a sheet up to their head. It is not necessary to cover the face as the family may wish to see and be with their loved one. To respect cultural differences, leave a light on in the room, as some cultures do not allow the patient to be in the dark until burial. Also, make sure someone is with the body at all times, either you or a family member. In Jewish tradition, as well as some others, the body must not be left alone until burial. It is OK if the family wishes to wash and clean the body.
Help the family contact hospice staff and the funeral home as they wish. Offer to assist with any other services before leaving. If medical supplies and equipment were used, clean up and take any garbage back to the ambulance with you.
SIDEBAR: INTERVENTIONS FOR DNR AND HOSPICE PATIENTS
Noninvasive airway maneuvers
Drug therapy per medical control discretion8,9
SIDEBAR: POSSIBLE DNR PATIENT MEDICATIONS
Analgesics (morphine, fentanyl)
Epinephrine for anaphylaxis
SIDEBAR: PALLIATIVE CARE FOCUS AREAS
SIDEBAR: SENTIMENTAL JOURNEYS
Fall is beautiful in Colorado, and the dying man had one wish--to see the aspens one last time. It was an easy decision for paramedic Steve Berry and his partner, who were transporting the man home to die. They turned off the main highway onto a dirt road that led to a meadow full of aspens, took him out of the ambulance and let him drink in the view.
On that day in the early '90s the idea for a hospice program called Sentimental Journey was conceived.
"We found it to be such a moving experience that we discussed organizing a program where we could provide a last wish for terminally ill patients who are too sick to go by car or wheelchair and need the assistance of an ambulance crew," says Berry. "Both the ambulance service and Pike's Peak Hospice embraced the idea, and it became official."
New protocols were developed working under hospice guidelines, and Berry and his partner went to hospice training, because they had stepped out of the realm of the normal practice of saving lives and were now just making people comfortable, knowing their limitations of treatment and pain management. It didn't take long, says Berry, before requests starting coming in from patients who wanted to make one last trip home, attend a graduation or wedding, or visit the scenic Garden of the Gods, Pike's Peak or the zoo.
But not all of the trips are pleasure, says Berry. "One lady and her daughter were both in hospice, and when the daughter died, we took her mother to the funeral. I remember one lady whose last wish was to go shopping at Walmart, which we thought was very strange, but she knew she was going to die and wanted to finish her Christmas shopping for her family.
"Sometimes the journeys aren't just for the patients--they're for the survivors," he continues. "One gentleman was close to death and his wife wanted him home for one last meal. When we picked him up, I thought, 'This man is barely conscious and he won't be able to eat.' His wife cooked an incredible, elaborate meal and said, 'I know he can't eat it, but he can smell my cooking,' so we ate the food and visited with her for a couple of hours while he rested in his own bed. It gave her a chance to debrief and us a chance to comfort her."
To date, Berry knows of at least 30 similar programs nationwide.
"Some of them change the name and others keep the title 'Sentimental Journey,'" he says. "We provide guidelines and protocols, because there are some treatment issues that come under different guidelines than we normally follow as an ambulance service. We find that paramedics who are burned out before they become involved in this program are actually rejuvenated by it. Bearing witness to people's last hours is a different aspect of treatment. Our philosophy has become, 'EMS doesn't have to be limited to saving lives; it can be providing care and comfort for those who are terminally ill.' I encourage EMS providers to look beyond the normal boundaries and acknowledge that death is not something to be feared, but it's part of the life process. I think it actually helps medics understand that not all death is therapeutic failure." --Marie Nordberg, Associate Editor
1. Tanabe MKG. DNR: Not the total picture. Annals of Long Term Care 12(1), November 2004.
2. Cleveland Clinic, Department of BioEthics, Policy on Do Not Resuscitate. www.clevelandclinic.org/bioethics/policies/dnr.html.
3. Krause MD, Richard S. Palliative Care in the Acute Care Setting. http://emedicine.medscape.com/article/1407757-overview.
4. US Legal Definitions, US Legal, Inc. http://definitions.uslegal.com.
5. Wisconsin Department of Health Services, Do-Not-Resuscitate (DNR) Information. http://dhs.wisconsin.gov/ems/EMSsection/DNR.htm.
6. Kruse RL, Binder EF, Szafara KL, Mehr DR. Effect of do-not-resuscitate orders on hospitalization of nursing home residents evaluated for lower respiratory infections. Journal of the American Geriatrics Society 52(1), 2004.
7. Beach MC, Morrison RS. The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society 50(12):2057-2061, 2002.
8. Overview of Comfort Care/DNR Order Verification Protocol, Massachusetts Office of Health and Human Services. www.mass.gov.
9. Grant Hidalgo and Catron Emergency Medical Services Protocols, Do Not Attempt Resuscitation (DNAR). http://ems.grmc.org/ems_046a.html.
10. Aehlert B. Paramedic Practice Today Above and Beyond, 1st ed., St. Louis, MO: Mosby, Inc., 2010.
11. Mularski RA, et al. Pain management within the palliative and end-of-life care experience in the ICU. Chest 135(5):1360-1369, 2009.
12. Fields L. DNR does not mean no care. Journal Neuroscience Nurses 39(5):294-296, 2007.
13. McCallion T. Sentimental journey: Granting hospice patients one last wish, JEMS 34 (11), 2009.
14. Iowa Department of Public Health, Bureau of EMS, Out of Hospital DNR. http://idph.state.ia.us/ems/dnr.asp.
Kevin T. Collopy, BA, FP-C, CCEMT-P, NREMT-P, WEMT, is an educator, e-learning content developer and author of numerous articles and textbook chapters. He is also the performance improvement coordinator for Vitalink/Airlink in Wilmington, NC, and a lead instructor for Wilderness Medical Associates. Contact him at email@example.com.
Greg Friese, MS, NREMT-P, is director of education for CentreLearn Solutions, LLC. He is an educator, instructional designer, author, presenter and podcaster. Connect with Greg on Facebook, Twitter, or e-mail him at firstname.lastname@example.org.