1. When People Are Dying: Palliative Care
Originally by:
Pamela Parrish, RN, CHPN
Clinical Consultant
School of Nursing, University of Pennsylvania
Diane Stillman, MSN, RN, CS
Neville Strumpf, PhD, RN, C, FAAN
Edith Clemmer Steinbright Professor in Gerontology
Director, Center for Gerontologic Nursing Science and
Hartford Center of Geriatric Nursing Excellence
Rewritten in 2012 by:
Rebecca Trotta, PhD, RN
Hospital of the University of Pennsylvania

2. Introduction The U.S. population is rapidly aging
Many people who live in a long-term care setting will die there
The long-term care setting is an excellent one for palliative care
The United States is expected to experience rapid aging of the population over the next few decades. By the year 2050, the number of Americans over age 65 is expected to grow to 88.5 million, up from 40.2 million in more than double.
As adults age, their medical conditions become less responsive to curative treatment, and they also experience significant physical and cognitive decline. This is often why they require long-term care.
Most older adults who reside in a long-term care setting will die there. This setting presents a great opportunity to provide end of life care that supports comfort and quality of remaining life.
This module will focus on ways to improve care for those at the end-of-life.

3. Objectives Understand the principles of palliative care
Understand importance of establishing goals of care
Describe common physical and psychological symptoms at end-of-life and ways to address them using a palliative care approach
Describe ways to recognize the final hours and how best to support resident, family and staff, including spiritual and cultural considerations
After participating in this presentation, you will be able to:
Understand the principles of palliative care and how it differs from traditional care
Understand the importance of establishing and fulfilling goals of care as a critical element of palliative care
Describe the common physical and psychological symptoms at end-of-life and ways to address them using a palliative approach
Describe ways to recognize the final hours and how best to support the resident, family and staff

4. What is Palliative Care?
WHO definition
Different from traditional care
Different from hospice
A philosophy of care….
[THIS SLIDE CAN BE SKIPPED IF TIME IS LIMITED]
So what exactly is palliative care? There are several definitions available that attempt to explain it.
The World Health Organization (WHO) defines palliative care as an “approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems-- physical, psychosocial, and spiritual.”
Palliative care differs from traditional care in that it typically does not rely heavily on invasive tests or procedures or other diagnostic methods that are aimed at finding a cause or cure for a certain symptom or medical condition.
Rather than curing disease, palliative care focuses on alleviating discomfort .
Palliative care is very similar to hospice in that both share the same philosophy or perspective on the type of care delivered; there are, however, a few important differences.
Palliative care can be delivered by anyone at any time over the course of care, whereas hospice is delivered primarily by a hospice care team that is separate from the traditional care team.
Hospice is a Medicare benefit, so there are regulations regarding eligibility and treatment once a resident enrolls in the benefit. Palliative care, on the other hand, does not have any regulatory restrictions.
Palliative Care:
Provides relief from pain and other distressing symptoms
Regards dying as a normal process
Intends neither to hasten or postpone death
Integrates the psychological and spiritual aspects of patient care
Offers a support system to help family cope during the patient’s illness and in their own bereavement
Uses a team approach to address patient and family needs

5. Who Benefits from Palliative Care?
Residents
Family
Staff
As we just discussed, the primary person to benefit from palliative care is the resident.
Palliative care, however, is also intended to help family members; we will discuss this later in this module.
In addition, when staff members work together to provide palliative care, thereby alleviating pain and suffering for their dying residents, they report a greater sense of teamwork, purpose, and job satisfaction.

6. Who Provides Palliative Care?
A team approach is best
Anyone involved in the resident’s care can provide some aspect of palliative care
It is important that all members of the care team be supportive of a care plan that focuses on palliative care. If some members of the care team do not agree on a palliative approach, it will be challenging for the other members to fully deliver palliative care.
Because palliative care is not just medical or nursing care, it is best implemented using a team approach.
All members of the team have an important role to play in providing palliative care.
This also includes ancillary staff.

7. Who Provides Palliative Care?
Nurse
Nursing Assistant
Physician
Social Worker
Dietitian
Chaplain
Physical/Occupational Therapist
Recreation Therapist
[IF TIME ALLOWS, HAVE THE PARTICIPANTS DISCUSS WHAT EACH DISCIPLINE CAN OFFER. ASK PARTICIPANTS TO SHARE THEIR EXPERIENCES AND DISCUSS HOW THEY CAN ENCOURAGE INVOLVEMENT IN PALLIATIVE CARE AMONG THEIR CURRENT CARE TEAM MEMBERS].
Can you think of ways members from each of these disciplines can be involved in palliative care?
Nurse- Primary palliative care provider. Carries out most aspects of the plan of care. Monitors resident’s physical condition, symptoms, and response to palliative interventions.
Nursing Assistant – In providing direct care, helps nurse to identify resident’s needs and monitor response to treatment. Delivers many non-medical palliative interventions.
Physician or Nurse Practitioner – Monitors physical response to palliative care, orders necessary interventions, discusses prognosis with resident/family, orders resident’s advance directives
Social Worker –Helps resident/family plan for end-of-life issues like finances and funeral arrangements. Can also provide psychological and emotional support.
Dietitian – Offers suggestions for liberalizing diet at the end-of-life and help families be involved in meals.
Chaplain – Provides spiritual and emotional support to residents, families, and even staff
Physical and/or occupational therapists – Provide therapies or supportive devices to maximize resident’s comfort; teach family members how to assist resident/be involved in resident’s care
Recreation therapist – Provide individual recreational opportunities for residents who may be confined to their rooms. Can provide music or other comfort measures for the resident.

8. Developing a Palliative Plan of Care
Agreed to by all members of interdisciplinary team
Propelled by nursing
Addresses the following:
Goals of Care
Physical Symptoms
Psychological Symptoms
Spiritual Needs
Family Needs and Concerns
Liberalized Restrictions
For a resident’s palliative plan of care to be successful, all members of the interdisciplinary care team must be in agreement with the plan.
while interdisciplinary, a palliative plan of care is largely propelled by nursing. Nurses and nursing assistants have the most frequent and regular contact with residents. Therefore, they are in a prime position to carry out the plan of care and to suggest needed changes based on the resident’/family member’s responses.
Typically, a palliative plan of care:
States the goals of care, which should be determined with significant family and resident input to the extent possible
Lists the resident’s physical symptoms and how each will be addressed
Lists the resident’s psychological symptoms and how each will be addressed
Addresses any spiritual needs of the resident and family
Addresses any other particular family needs and concerns, and finally,
Provides justification for liberalizing restrictions that hinder the resident’s wishes, for example, restrictions around dietary intake
Each aspect of the plan of care will now be described in more detail.

9. Goals of Care Hold family meeting with interdisciplinary care team
Clarify that palliative care does not mean withdrawing care
Focus on what will be done, not what will be removed
Complete advance directives
Know various types
Understand that family may be overwhelmed
Frame plan to meet goals of care
Revisit plan frequently with team, including family
The first step in establishing goals of care is to have a meeting with the family, resident (if possible), and members of the interdisciplinary care team.
Here, it is important for the resident and family to understand that palliative care does not mean that care will be withdrawn.
Each member of the interdisciplinary team should describe what s/he can provide that will maximize the resident’s comfort and quality of life.
The focus should be on what will actively be done for the resident, not on what will be removed.
Written advance directives that reflect the goals of care should be completed. This process can be very overwhelming for residents and family members. The person guiding this process should check in frequently with the resident and family to ensure they are not overwhelmed or have any questions.
There are various types of advance directives. Discussing each type is beyond the scope of this presentation; it is important, however, to be familiar with the typical documents used at your facility and be able to answer common questions about them.
Remember, the goals of care will provide the framework for the entire palliative care plan, so it is important for the team to ensure all members understand and clearly document the resident/family goals. These should also be revisited at regular intervals with both the family and the interdisciplinary care team to ensure the plan continues to reflect the goals.
As you can imagine, clear, open, and frequent communication is critical here!

10. Symptoms at End-of-Life
Pain
Common, complex
Respiratory Symptoms
Shortness of breath, coughing, wheezing
Gastrointestinal Symptoms
Nausea, constipation
Psychological Symptoms
Depression, delirium, anxiety
Pain is a very common symptom for older adult long term care residents.
Research has shown that, despite the common nature of pain, it is often under-addressed and under-treated. A thorough pain assessment (source, level) is critical to ensuring that the resident’s comfort is maximized through appropriate pain management
Respiratory symptoms are also very common. For example, shortness of breath, wheezing, and coughing.
Gastrointestinal symptoms are also significant. In some situations, however, if, for example, constipation is not bothersome to the resident, it may not require intervention. If the resident is not eating or eating very little, constipation is a natural consequence.
Untreated psychological symptoms can diminish quality of life a the end-of-life. Assessment and intervention are appropriate.

11. Interventions
Around the clock vs. PRN medications, especially for pain
Oxygen, nebulizers, diuretics, antitussive w. codeine, prednisone
Anti-nausea medications, gentle bowel stimulants
Anti-depressants, anxiolytics
Non-pharmacological therapies
(IF THE AUDIENCE IS NURSES)…Nurses are in the best position to determine whether the resident needs around-the-clock versus PRN medications for pain. A resident with one or more chronic painful conditions, such as arthritis, peripheral vascular disease, or a chronic wound, should get around-the-clock medications.
(IF THE AUDIENCE IS CNAs)…Nursing assistants are in an ideal position to help assess pain because they spend the most time with the resident. Pain assessment observations should include intensity, location, duration, what makes it better or worse, and any changes the CNA may notice from previous observations.
Continued assessment of pain relief from medications is critical, because residents are often under-medicated. Ensure your resident is receiving an appropriate dose.
To address respiratory symptoms, interventions such as oxygen, nebulizers, and/or diuretics (if related to heart failure) are often effective. Other options to address respiratory symptoms may include an antitussive with codeine (which may also help if the resident cannot sleep due to nighttime coughing) or prednisone.
To address nausea, consider both pharmacological and non-pharmacological interventions. Liberalizing dietary restrictions may be both appropriate and helpful.
Psychological symptoms are often the most difficult to treat. If the resident is delirious, a medical work-up should be done to determine the cause and alleviate it.
In the case of depression and/or anxiety, the physician or nurse practitioner should do a complete exam to determine the diagnosis. Medications such as anti-depressants or anxiolytics (anti-anxiety medications) can be very helpful.
But in addition to medications, there are many non-pharmacological or non-medicine interventions that can help the resident. Examples include therapeutic touch or massage, reminiscing with the resident, playing music, and aromatherapy.The presence of family or comforting/familiar faces often helps relieve a resident’s anxiety.

12. Addressing Spiritual Needs
Don’t wait until the last minute!
Offer religious music and/or icons
Arrange visit from religious leader
Facilitate rituals
Assist with funeral arrangements
Residents and families require attention to their spiritual needs throughout the continuum of palliative care. These needs may change as death approaches, and, of course, will change once the resident has died.
One of the most important things to note is: Do NOT wait until death is imminent before addressing spiritual needs. At times, residents and their family members may not know how to request support for their spiritual needs, or they may not know how to explain their needs. As nurses, we must be aware that even without need expression, patients and families may still be experiencing significant distress. Therefore, it is important that we offer spiritual support.
For example, we can offer to play religious music or provide religious icons or items that may be familiar and comforting to the resident.
With enough notice, we can help arrange a visit from a religious or spiritual leader from the resident’s faith. It is especially important not to wait until death is imminent for this, because a request can sometimes take a few days.
We can ask about rituals or spiritual practices that may be comforting for the resident/family, and then facilitate their use within the setting to the extent possible .
Finally, residents and families may be concerned about things like planning a funeral. Social workers can often be instrumental here in helping families through this process, especially if they don’t live locally, which is sometimes the case.

13. Cultural Considerations
Everyone has one or more cultures
Race, ethnicity, religion, lifestyle contribute to culture
Culture
Is manifested through values, customs, behaviors & beliefs
Affects decision-making and views re: death and dying and palliative care
Culture can be defined as those socially transmitted values, customs, arts, behaviors, and beliefs that guide a person’s worldview and decision making. Who you are, what you believe, and how you act is formed by your culture.
Everyone comes from and is influenced by one or more cultures. It is incorrect to think of some people as being more influenced by culture than other groups.
Race and ethnicity contribute to a person’s culture. In other words, middle class Americans of European descent have a distinct culture just as do Koreans or Somalis.
It is also important to note that culture refers not only to ethnic or racial cultures, but also can be defined by religious beliefs and by lifestyle.
It is important to understand that a resident’s culture and the culture of his or her family affects decision making and perspective on death and dying. It will also affect views toward and acceptance of varying aspects of palliative care that we are discussing throughout this module.

14. Preserving Personhood and Dignity
Cleanliness and odor control
Bathing and grooming
Face, hands, and feet
Mouth care, nail care
Clothing and bedding
Promote home-like environment
Pictures, bedding, personal items
Preserving personhood and dignity is one of the most important aspects of palliative care. As residents lose cognitive capabilities and the ability to state their preferences or advocate for themselves, it becomes the responsibility of all members of the team to preserve residents’ personhood and dignity. This concept overlaps with preventing depression and helping the person feel good. Although dying residents may seem unaware, we don’t really know how aware of their surroundings they actually are; therefore, it is important to maintain personhood to the extent possible.
This can be done in a variety of ways. First, meticulous attention to cleanliness is critical. As incontinence increases at the end of life, frequent perineal care and prevention of odors is critical.
It is just as critical to maintain cleanliness of the face, hands, and feet. For example, if a man were typically clean shaven, he should continue to be shaved.
Do not allow crust to form around the lips, and keep finger nails and toe nails well groomed.
To the extent possible, continue to dress the resident in personal clothes as opposed to a hospital gown. If the resident has a favorite pillow, blanket, or even a stuffed animal, be sure those items are on the resident’s bed.
As death draws near, the amount of medical equipment in the room may increase, e.g., oxygen tanks, nebulizer machines, etc. Try to promote a homelike environment by putting care-related items away when not in use. Although space may be limited, try not to replace the resident’s personal items with medical items on room tables.

15. Final Hours Common symptoms are distressing
Pain, noisy breathing
Attend to symptoms and hygiene
Limit/withhold food and fluid intake
Maintain personhood
Talk to resident
The final hours of life can be distressing for both staff and family to witness. The most common symptoms residents will experience are pain and noisy breathing.
It is important for you to anticipate these symptoms and work with the care team to ensure that the palliative plan of care incorporates interventions to alleviate pain and respiratory symptoms. As nurses you will be in the primary position to teaching the family about what the resident is experiencing, and what is being done to ensure the resident’s comfort or attend to distressing symptoms. Meticulous attention to hygiene will also be important, especially if incontinence increases.
As the resident approaches death, he or she will not be taking oral foods and fluids. It is important to educate the family that the resident is not starving or thirsty, and that this is part of the natural dying process. Families are often very distressed about the fact that their loved one will no longer eat or drink. Family members may request IV fluids and/or a feeding tube. These interventions do not help a resident live longer. In fact, they can worsen respiratory symptoms, making it harder for the resident to breathe. They can also increase edema and overall discomfort, and also increase incontinence.
As previously noted, maintaining personhood during the final hours of life is critical to ensuring dignity through death. In addition to the interventions noted on the previous slide, you can also continue to talk to the resident, letting him or her know that you are there and what you are doing to promote comfort. You can also encourage family members to talk to the resident.

16. Supporting the Family Address questions Provide information
Give suggestions on how to support resident
Offer comforting items
Chairs, tissues, drinks
Offer interdisciplinary support
Social work, chaplain
Family members often have many questions, even if their loved ones have been ill for quite some time, and even if their loved ones have lived in long-term care for many years.
It is important to address their questions directly.
Provide open and honest information. Be sure to communicate that death cannot be exactly predicted. As nurses, you can offer powerful information. Do not defer solely to the doctor to address questions about symptoms or the resident’s physical condition.
As you provide information, also give the family suggestions on how they can support the resident. For example, they may want to bring in pictures or comforting personal items, such as a throw blanket or figurines or a pet the resident may have liked. Families can also participate by providing mouth care, styling the resident’s hair, or applying lotion to the skin.
Be sure to offer the family comforting items such as tissues, a glass of water. Also make sure there are enough seats in the room and that unnecessary care-related items are removed from the room to make the environment more home-like and less “medical.”
Finally, be sure to call on your colleagues such as the social worker and/or chaplain to offer support to the grieving family.

17. Can You Now… Understand the principles of palliative care
Understand importance of establishing goals of care
Describe common physical and psychological symptoms at end-of-life and ways to address them using a palliative care approach
Describe ways to recognize the final hours and how best to support resident, family and staff, including spiritual and cultural considerations
This concludes the module on palliative care in long term care. Do you feel that you can now…
Understand the principles of palliative care?
Understand importance of establishing goals of care?
Describe common physical and psychological symptoms at end of life, and ways to address them using a palliative care approach? And,
Describe ways to recognize the final hours and how best to support the resident, family and staff, including spiritual and cultural considerations?