Living with Dying

In an article published in The Guardian, Australian oncologist and author, Dr. Ranjana Srivastava stated frankly, “some patients die. As a doctor, I have to live with this inevitable fact,” (Srivastava, R., 2015).  Although healthcare professionals working in an array of specialties have different training and protocols for treatment, the reality is that most have one thing in common—the death of a patient.

Despite how common the death of a patient is, healthcare professionals don’t tend to openly speak about the toll it takes on them emotionally, as Dr. Srivastava describes when stating, “’I lost a patient today’ attracted a unique brand of awkwardness among doctors,” (Srivastava, R., 2015).  Unfortunately, physicians are not trained in dealing with loss.  Unlike the loved ones of a patient, healthcare professionals often are not provided access to grief counseling, and furthermore, they sometimes do not even have the time to reflect on their feelings regarding the death of their patient(s).  The need to grieve is extremely disparaged, as the following common misconceptions of healthcare professionals reveal:

• “As a professional, I am trained not to be affected.”
• “Grieving is unprofessional.”
• “Just move on, there are other patients to serve.”
• “My work is not personal.”
• “I can’t do my work if I let myself grieve.”

Dr. Srivastava described the concept very vividly saying, “the consolations of fulfilling a doctor’s obligations were familiar, but so were the exquisite and fragile emotions that accompanied the loss of a patient. It was as if a bit of grief always lurked in the corridors, springing out to hijack the unsuspecting soul. Sometimes you swiped it away, other times it overpowered you,” (Srivastava, R., 2015).

Within the last 40 years, research has identified potential adverse consequences that affect the health and wellness of healthcare professionals who are unable to cope with their emotions associated with the death of a patient. These consequences include stress, problems with physical health, depression, burnout and “compassion fatigue.”  The theme of balancing emotional boundaries emerged from the research, where a healthcare provider is able to grow close enough to care about the patient while creating enough distance to avoid the pain of loss. Unfortunately, few professionals that were surveyed felt they had been able to do this successfully.

Coping Strategies

Some of the recommended strategies for coping with a patient’s death are self-explanatory, such as exercising, eating a healthy diet, learning how to set boundaries, and setting aside time for yourself. Others are not as typical, but all can show to be beneficial for medical professionals and their teams to remain healthy during emotionally stressful times.

• Seek the guidance of a trusted senior healthcare provider—Most providers have had this experience at some point in their career, and they may be willing to offer their own insight and/or coping strategies.
• Be introspective and thoughtful—Determine what lessons can be learned that will help you and your team grow, and be open to feedback.
• Provide support to your team—Review the case with your team and allow everyone to have a voice in expressing what occurred.  Also being there for the family is still the priority.  No matter how you or your staff are feeling, they have lost a loved one.
• Seek the support of your family/friends—Allow yourself to mourn, and seek comfort from family, friends, clergy, and/or peers.
• Consider attending the funeral or memorial services—This will be based on the relationship that you have cultivated with the patient and the family.  Some professionals will find closure from the process, and families appreciate the presence of providers.

• Write a personal note to the family.

• Reach out to a colleague who has lost a patient—Opening and maintaining lines of communication can benefit you and your colleague(s).

• Seek professional help—A patient’s death can lead to extreme stress.  If a case deeply troubles you, consider discussing it with a counselor or therapist.

Medical professionals are responsible for their own care.  Therefore an honest assessment of your ability to cope with loss, and of the toll it may have already taken, can help determine the best next steps for you.

References

Srivastava, R. (2015). Some patients die. As a doctor I have to live with this inevitable fact. The Guardian. Retrieved from https://www.theguardian.com/commentisfree/2015/mar/20/patients-die-doctor-grief

Staying as Healthy as Possible

Having the opportunity to help patients and their loved ones through the extremely difficult process of death and dying is incredibly rewarding, but it also can be incredibly stressful.  It is essential that teams of healthcare providers remain as healthy as possible, especially during emotionally strenuous times.

If more than three of the following apply to you, it is possible that you are suffering from compassion fatigue:

• I feel my patient’s stress deeply
• Small changes are draining for me
• I have lost my sense of being hopeful
• I have outbursts of anger or irritability
• Due to my work with patients, families and co-workers, I feel tired and rundown
• It is difficult for me to separate my work and personal lives
• Having unfinished personal business makes me feel overwhelmed 
• Falling or staying asleep is difficult for me
• As a helper, I feel like a failure

How You Can Relieve Stress

Taking time out of your busy schedule to truly focus on yourself can relieve some stress. This must be done so without regret or shame, and with a clear conscience, as you can’t afford not to.

Here are some helpful reminders/tips to get you started:

• Your health is also important. Give yourself the care you need by eating well, sleeping well and participating in hobbies or activities that get your mind off work, (i.e. exercising or spending quality time with friends and family).
• Take routine, short breaks throughout the work day. Allowing small breaks from your daily workload, such as taking a ten-minute walk or having a quick snack, can assist in easing the stress and even improve both your mood and your productivity.
• Foster an effective system of support, both at work and in your personal life.  Talk with your colleagues about how you are feeling and ask how they are doing.  Having a sense of camaraderie and support can have a very positive impact on staff in the workplace. Also, if you feel it might be helpful, reach out to a clergy member or professional counselor for advice and comfort as well.
• Keep in mind that your work is valuable. The work that you do for patients and their families is meaningful. Regardless, death and dying are stressors, and it can be easy to forget that your daily work brings quality of life to the sensitive period when a person is nearing end-of-life.
• Remember that stress is a very natural response to living and working so closely to death. A direct and honest evaluation of your stress levels, along with following the appropriate steps to manage that stress can benefit you greatly, both professionally and personally.

When the time arises for a loved one to be enrolled in hospice care, determining a payment method is understandably the furthest thing from the minds of the family members.  Precious Healthcare can assist families in navigating the payment aspect of enrollment in hospice care.

Hospice services are covered by Medicare, Medicaid and most private health insurance providers, and Precious will never turn away a patient in need based on being uninsured or underinsured.

Medicare

The most common form of insurance for patients who receive hospice care is Medicare.  The Medicare Hospice Benefit is available to beneficiaries who are covered under Medicare Part A, and covers the cost of hospice care including medications and equipment related to the patient’s diagnosis.  Patients who utilize the Medicare Hospice Benefit are still eligible for coverage under Medicare Part B for any services that are not related to their terminal illness.

U.S. citizens and many legal residents qualify for Medicare at the age of 65.  Medicare also covers those under the age of 65 who have End-Stage Renal Disease (ESRD) or who have received Social Security Disability Income payments for 24 months (or for one month for patients with ALS).

Medicaid

Medicaid is a state-funded program that affords medical coverage for patients who have limited financial means.  If a patient’s income is slightly higher than the amount for Medicaid eligibility, “spend-down” amounts must be satisfied in order to access maximum coverage of this benefit. The Medicaid Hospice Benefit also covers the costs of hospice care including medications and equipment related to the patient’s diagnosis.  

Both Medicare and Medicaid Hospice Benefits reimburse Precious for hospice services.

Medicare HMO Coverage for Hospice

The Medicare HMO transfers coverage to Medicare Part A for hospice benefits and the entirety of the aforementioned Medicare Hospice Benefit applies.

Private Insurance

Hospice benefits can vary significantly among private health insurance plans, so Precious will verify and negotiate benefits for patients with commercial or private health insurance.

Coverage will be determined at the time of hospice admission, and the allowable benefits will be explained clearly.  In most cases, Precious negotiates a daily rate that provides coverage for hospice services.  As with any healthcare benefit plan, deductibles and co-payments may be applied to the hospice benefit.

Coverage for the Uninsured

If a patient does not have health insurance coverage, Precious will provide services based on need, regardless of his or her ability to pay.

Discontinuation of Hospice Services

Patients have a right to choose at any time to discontinue their hospice services. Occasionally, patients may choose to pursue active treatment or alternative medical benefits as opposed to continuing with hospice care.  With appropriate notification, this transition can be easily achieved.  Also, Medicare, Medicaid and most private health insurance providers allow for hospice benefits to be reactivated at a later date.

You have Options

Medicare, Medicaid, Medicare HMO and most private insurance companies allow you to choose your own provider for hospice services regardless if the hospice is outside of the HMO network.  Allow us to be there for you during life’s precious moments.

Being in an industry where compassion is woven into the framework presents its own set of challenges.  Health care providers who care for patients with serious illness need to have a well-developed sense of empathy, however continuously providing compassion for others without also providing adequate care for oneself can be harmful to even the best-intentioned healthcare provider.  Multiple negative emotions can commonly result when a patient is nearing the end-of-life, including grief, fear, conflict and desperation.  Healthcare professionals are not immune or exempt from these emotions that can easily be contagious during such difficult times.  

Signs of Compassion Fatigue

According to an article published in Family Practice Management, compassion fatigue is defined as “a deep physical, emotional and spiritual exhaustion accompanied by acute emotional pain,” (Pfifferling, et al., 2000). It can appear differently in each individual, but according to the authors, common symptoms of compassion fatigue include:

• Anger
• Depression or anxiety
• Gastrointestinal problems
• High blood pressure
• Addictive behaviors
• Difficulty sleeping
• Physical or emotional exhaustion
• Irritability
• Diminished self-esteem

Self-Care and Coping Strategies

Ideally, healthcare professionals should possess what researchers call “compassion satisfaction” which is defined in an article published in the Journal of Psychiatric Nursing as “the pleasure you derive from being able to do your work well, creating new life values” while compassion fatigue is defined as “a negative consequence that occurs when helping with the pain and trauma of the individuals being cared for,” (Yilmaz, G. & Ustun, B, 2018).  Self-care can improve the element of compassion satisfaction.  Other than the typical stress-eliminating techniques (exercise, creating boundaries, etc.), some other methods have shown to help compassion fatigue specifically, such as self-awareness and rituals.

Self-Awareness

Research that was reported in the Journal of the American Medical Association has shown that engaging with patients and situations in a highly conscious, and aware state—specifically moment to moment—could assist in preventing compassion fatigue with healthcare providers.  The idea is to practice mindfulness by paying close attention to one’s own emotions and reactions (their internal reality), while consciously working to meet the needs of others (their external reality). The researchers identified that this mindful approach to working, combined with mindful meditation and journaling, has shown to reduce stress, enhance well-being and increase empathy in healthcare providers, (Kearney, M. K., et al., 2009).

Rituals

In an online survey of hospice staff across 38 states, 71% of respondents reported using personal rituals such as lighting candles, praying, attending funerals and calling patients’ family members. The results were published in the Journal of Palliative Medicine, and showed that professionals who developed rituals around the death of their patients, scored higher on a compassion-satisfaction scale and lower on a burnout scale, (Montross-Thomas, L. P., et al, 2016). 

Make sure to maintain the usual antidotes to compassion fatigue, such as eating well, resting well, and exercising.  Additionally, before taking on the role of the rock that everyone else leans on, implement some mindful activities to keep yourself on an even keel.

References

Pfifferling, J-H., & Gilley, K. (2000). Overcoming compassion fatigue. Family Practice Management, 7(4), 39-44. https://www.aafp.org/fpm/2000/0400/p39.html?printable=fpm

Kearney, M. K., Weininger, R. B., Vachon, M. L. S., Harrison, R. L., & Mount, B. M. (2009). Self-care of physicians caring for patients at the end of life. Journal of the American Medical Association, 301(11), 1155-1164. https://jamanetwork.com/journals/jama/article-abstract/183563

Montross-Thomas, L. P., Scheiber, C., Meier, E. A., & Irwin, S. A. (2016). Personally meaningful rituals: A way to increase compassion and decrease burnout among hospice staff and volunteers. Journal of Palliative Medicine, 19(10), 1043-50. https://www.liebertpub.com/doi/abs/10.1089/jpm.2015.0294

Yilmaz, G. & Ustun, B. (2018). Professional quality of life in nurses: Compassion satisfaction and compassion fatigue. Journal of Psychiatric Nursing 9(3), 205-11. https://jag.journalagent.com/phd/pdfs/PHD-86648-REVIEW-YILMAZ[A].pdf

For patients that are eligible for hospice, the Medicare Hospice benefit covers the identified four levels of care.  The payments from Medicare include all services, medications, equipment and supplies related to the terminal illness for each level of care. 

Precious is able to transition patients who are eligible to hospice care so they are able to take advantage of all of the covered services and supplies that are available to them.

The four levels of care are categorized as the following:

Routine Home Care

The majority of hospice services are provided via routine home care.  In 2015, 98.7% of hospice care provided was in this category.  Routine home care includes scheduled, routine visits in the home by a multidisciplinary care team, including hospice physician, registered nurse, hospice aide, social worker, chaplain, volunteer and bereavement specialist. “Home” is defined as the patient’s residence, which may be a private home, assisted living facility or nursing facility.

Continuous Home Care

Continuous home care is available during times of crisis when a higher level of continuous care is needed for at least eight hours in a 24-hour period to achieve palliation or management of acute medical symptoms.  Fifty percent of the care needed must be provided by a nurse.

Inpatient Care

Some patients have short-term symptoms so severe they cannot get adequate treatment at home, or they may feel more comfortable getting treatment at an inpatient facility.  Symptoms requiring inpatient care are the same as those requiring continuous care, only the setting of care may be different.  With inpatient care, nurses are available around the clock to administer medications, treatments, and emotional support to make the patient more comfortable.

Respite Care

Primary caregivers are at risk for burnout—respite care can provide a temporary break.  Respite care services are more for the family than for the patient.  If the patient does not meet the criteria to qualify them for continuous care or inpatient care, but the family is having a difficult time, respite care may be an option.  If a patient’s family is the primary source of care and cannot meet their loved one’s needs due to caregiver stress or other extenuating circumstances, a patient may temporarily be admitted to an inpatient environment to give the family a needed break.There is a five-day limit on respite care. Once that period expires, the patient is discharged and returns home.

References

Department of Health and Human Services, Centers for Medicare and Medicaid Services. (2004). CMS manual system. Retrieved from https://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/downloads/r15bp.pdf.

The coronavirus (Covid-19) pandemic has caused a difficult and unprecedented period for health care providers, patients and their families globally.   

Precious Healthcare understands the magnitude and impact of the current landscape and is dedicated to providing updated, clear information about Covid-19 and its impact, as well as how we will continue to respond to the virus as an organization.

These frequently asked questions provide information about safety protocols for staff, patients, and families in our facilities and under our care. 

As the situation changes and our handling of Covid-19 evolves, this FAQ will be updated to reflect the latest information available to us.

Is hospice care available during the coronavirus pandemic?

Precious Hospice accepts referrals, and continues to visit hospice patients.  Our staff has the appropriate training, and necessary personal protective equipment to ensure the safety of patients while providing services in their homes during this pandemic.

Does Precious accept patients who test positive for Covid-19?

Our team is trained and prepared to provide care should a hospice-eligible patient who tests positive for Covid-19 be referred.

Must hospice patients with suspected or confirmed infections of Covid-19 be hospitalized? 

As with any other infection, Covid-19 calls for an individualized approach to care.

Will the Precious team assist in relieving symptoms of Covid-19 for an infected patient?

The Precious team consists of experts in managing symptoms that patients commonly experience near the end of life.

Are elderly patients at a higher risk of contracting Covid-19? How can Precious help?

The Centers for Disease Control and Prevention (CDC) states that those at higher-risk for severe illness from Covid-19 are:

• People 65 and older
• People of any age who have a serious underlying medical condition
• People who live in nursing homes and long-term care facilities

Precious has a successful history of caring for medically fragile older adults. Hospice nurses have extensive training to prevent infections, manage pain, improve quality of life, and reduce unwanted trips to the emergency room.

How will Precious staff members conduct safe patient visits during the Covid-19 pandemic?

The Precious team will continue to adhere to the established screening protocols to evaluate the risk of contraction and spread of infection through each patient encounter.

What steps is Precious taking to make sure at-home hospice patients are safe during the Covid-19 pandemic?

Your health and safety are our highest priorities. We are taking extra safety precautions during every face-to-face visit, as our team is adhering to safety guidelines from the Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid Services (CMS), and state/local health departments.

Specific Steps taken by our team include:

• Daily fever and symptom-free certification by all visiting staff
• Implement droplet precautions when caring for patients with respiratory infection
• Use of personal protective gloves with all patients
• Additional hand hygiene before and after visiting facility/home

What about telehealth options during the coronavirus pandemic?

Virtual hospice care visits enable us to safely connect patients and their families with our doctors, nurses, chaplains, and social workers. 

What factors should be considered when caring for a hospice patient in their home during the Covid-19 pandemic?

During a time of crisis like the Covid-19 pandemic, family members and close friends continue to provide daily care.  Caregivers should develop and sustain habits and strategies to maintain their own health and well-being. This will help to limit viral transmission, and to avoid the consistent risk of burnout in caregivers.  Also, hospice patients at home should be separate from other people and animals as much as possible (a separate room ideally).  The Precious team can help you with extra safety measures, such as when and how to wear a face covering. 

Does Precious test for Covid-19?

For patients, Precious follows the recommendations from the Centers for Disease Control and Prevention (CMS), and state/local health departments which are based upon several factors like test availability, facility concerns, and the impact of a test result altering the plan of care.

During the coronavirus outbreak, can Precious help with providing extra supply needs (i.e. masks, gloves, wipes) for patients and their families?

As always, the Precious team will do whatever we can to meet the needs of our patients and their families.

Can a Precious social worker or spiritual care coordinator visit a hospice patient during the Covid-19 pandemic?

All Precious team members, including physicians, nurses, aides, social workers, spiritual care coordinators, and bereavement specialists, are following all safety guidelines from the Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid Services (CMS), and state/local health departments. 

Can I still volunteer for Precious during the Covid-19 pandemic?

At Precious, we are always recruiting volunteers. However, during the Covid-19 pandemic we are only accepting volunteers on a virtual basis. Luckily, you can make a difference from the comfort of your home!

For more information about Covid-19 cases, guidelines, and recommendations, please visit the following websites:

https://www.cdc.gov/coronavirus/2019-ncov/index.html

https://www.cms.gov/medicare/quality-safety-oversight-general-information/coronavirus

Hospice is focused on doing the very best that you can with the circumstances present.  After it is established that no cure exists for the illness of a loved one, the idea of “hope” takes on a different meaning.  There is a shift in the paradigm of hope, as it then means to do everything possible in order to satisfy the loved one’s wishes and to reduce their pain and suffering.  The focus shifts to comfort care provided in the familiar environment of their home, with family and friends near.

Hospice is the Next Critical Step of Care in the Continuum 

When clinical providers have come to the point where nothing more can be done for a patient, because there is no imminent cure for a particular condition, hospice care offers the next critical step of care in the continuum.  Contributing to the quality of life for the patient and their family is of the utmost priority, and hospice allows for goals related to quality of life to be met.

Focus Shifted to Spending Quality Time

It is likely that before a terminal diagnosis is reached, the patient’s loved ones are consumed with various concerns such as physician appointments, evaluation of possible treatments and cures, attempting to manage pain and symptoms, and more.  Upon finalizing and accepting a diagnosis, utilizing hospice care can provide an extremely significant relief, where spending quality time can be the new focus for loved ones and the patient can receive the quality care they deserve.

Solicited Care

When patients with terminal illness elect to utilize hospice care, the additional care can allow for patients to potentially live a bit longer than those who do not receive hospice care.  With the comfort associated with living at home, surrounded by loved ones, hospice patients can also experience a strong sense of relief, and furthermore, more control and choice within their circumstances.  The differentiated, and specialized care that is provided by the hospice interdisciplinary team can not only reduce suffering, but also allow the patient and their loved ones to spend more quality time together, and ultimately give back to the patient a sense of dignity.

Enrolling in hospice care is not giving up!  Hospice care is another aspect of patient-centered care within the continuum that provides to patients and their families the support they need to live their final days at home with an improved quality of life, and surrounded by those they care most about.

In hospice care there is a need for difficult conversations that lead to even more difficult decisions by healthcare providers, their patients and families. Of the most challenging conversations is that about commencing, maintaining or removing artificial nutrition and hydration (ANH) as a patient nears the end-of-life.

These decisions are complex for various reasons, including medical and ethical guidelines, along with the consideration of the emotions of patients and their families.  In addition, difficult questions about withholding food and water at the end of life will arise, and the religious, cultural, spiritual and personal factors that are involved with a loved one’s forthcoming death further complicate the conversation.

Hospice care providers can maneuver these difficult decisions by fostering engaging conversations that are rooted in empathy and well-informed by their expert clinical knowledge, skills and experience. 

Create an Individualized Plan for Hospice Care 

Proactive care planning demonstrates an optimal method for the patient and family to clearly explain the wishes and values of the patient before the patient becomes unable to do so. Providers can inform patients and families of the process of natural death, inclusive of the role that ANH may play.  The interdisciplinary team can be an indispensable source that they can rely on to effectively conduct such conversations so that all standards, including medical, ethical and professional, are met, or exceeded.

Since each patient’s prognosis, needs, and objectives of care vary, the decisions regarding ANH should always be established after thoughtful, transparent and informative conversation that needs to address the following:

• Specific diagnosis and prognosis (how ANH will impact each)
• Medical issues (the implications for or against ANH)
• Non-medical issues (the personal, cultural and religious beliefs and values of the patient and their family and how these can be respected in the hospice plan of care)
• Quality of life (if ANH will increase or decrease suffering)
• Goals of care (if the decisions related to care will reinforce the wishes and values of the patient)

Provide Education to Family Members About the Dying Process

Current research does not support the claim that withholding food and water at the end-of-life contributes to suffering and/or the prolongation of life.  This should be incorporated into the discussions with the patient and family as well as the creation of the specified plan for hospice care. Furthermore, as the condition of the patient changes, the plan for hospice care should change appropriately also.

It is important that the clinical staff in the interdisciplinary team mitigate the associated emotional issues by reassuring the family that the team is not “giving up on” or “starving” a patient in hospice care who stops eating or drinking.  On the contrary, the team should provide education to their patients and families regarding the human body’s natural dying process, including the fact that the digestive tract shuts down with an increasing incapacity to process food and liquids. Patients’ families can find reassurance in understanding that as food and liquid intake decelerates, the patient’s body often also releases the “feel-good” endorphins naturally to relieve pain.

The Benefits and Risks/Complications of Tube Placement: 

For hospice patients the following overall guidelines address feeding tubes:

• Existing feeding tube: If patients are enrolled in hospice with already existing feeding tubes, physicians should work closely with patients, their families and any other caregivers to make decisions with regard to if and when to reduce or cease ANH. As a patient nears the end of life, ANH can be responsible for discomfort, aspiration and development of bedsores, absent of the advantage of prolonged life.
• Placing a new feeding tube: Typically, feeding tubes are not placed for patients once they are admitted into hospice care. Rarely, a decision will be made, with collaboration between the patient, family and interdisciplinary team, to proceed with implementing a feeding tube.

Generally, research shows that ANH does not extend life or lengthen longevity of survival.  However, it has shown that it can be connected with various difficulties that decline the quality of life for the patient.  Typical difficulties caused by ANH include irritation, infection, blockage, discomfort, aspiration pneumonia, bleeding, reflux, uncontrolled diarrhea, limited socialization/movement, frequent replacement or removal of tubes, a lack of proper oral care, and elevated utilization of physical and/or chemical restraints. Tube feeding near the end-of-life can also develop sensations of “drowning” or uncomfortable “fullness” for the patient.

As an example of prognosis-based guidelines, the American Geriatric Society, American Academy of Hospice and Palliative Medicine, and The Society for Post-Acute and Long-Term Care Medicine do not recommend feeding tubes for patients with advanced Alzheimer’s/dementia, but instead, recommend oral assisted feeding, (Teno, J., et al, 2014).

Frequently Asked Questions from Healthcare Providers Regarding ANH at End-of-Life:

1. Do feeding tubes prevent malnutrition?  Not necessarily, as many people that are on hydration and feeding tubes still experience malnutrition due to their underlying disease, immobility, and/or neurologic deficits (but not typically from a lack of food and water).

1. Do feeding tubes prevent bedsores or expedite healing?  ANH can increase urine output, stools, diarrhea, upper airway secretions, and immobility, which can all intensify and increase bedsores, as well as interfere with the overall healing of existing wounds.

1. Do feeding tubes reduce the mortality rate?  According to research, life expectancy is virtually identical for patients who are offered ANH at the end-of-life with those who are not offered it.

1. Do feeding tubes prevent aspiration pneumonia? Current research does not support the claim that feeding tubes reduce the risk of aspiration pneumonia or regurgitated gastric material.  On the contrary, some evidence indicates that there is an increased risk of aspiration, as patients with tubes can still aspirate gastric material and oral secretions, or even suffer aspiration pneumonia from other natural causes.

Educate Families About End-of-Life Care

Healthcare providers are instructed to encourage patients’ families to adhere to the following established guidelines for hospice patients with regard to hydration and nutrition near the end-of-life:

• Provide small sips of water or liquids, ice chips, hard candy or significantly small amounts of food with a spoon if the patient is still able to eat and/or drink. Adhere to signs from the patient for when to stop.
• If a patient is no longer able to drink, maintain moisture of their mouth and lips with swabs, a wet washcloth, lip balm or moisturizers.
• Encourage family members to offer alternative forms of nourishment such as engaging conversation, loving touch, music, poetry, humor, visits from pets, gentle massages, reading, prayers or other behaviors of compassion and love.

References

Teno, J., Meltzer, D. O., Mitchell, S. L., Fulton, A. T., Gozalo, P., & Mor, V. (2014). Type of attending physician influenced feeding tube insertions for hospitalized elderly people with severe dementia. Health Affairs, 33(4), 675-82. Retrieved from https://www.healthaffairs.org/doi/10.1377/hlthaff.2013.1248

Hospice is designed to foster quality of life with an emphasis on pain and symptom management. The deterioration of the skin that is detected from pressure ulcers or other wounds is a sign that the systems of the body are diminishing, and even completely breaking down.

Even when nearing the end of life, effective wound care can significantly influence comfort physically, psychologically and emotionally.  Wounds tend to ignite feelings of fear, hostility and even suspicion of negligence.  Inadequate care, or a lack of care for wounds can be extremely detrimental to the patient, and furthermore, negatively affect the experience of the family  throughout the very difficult time of losing a loved one.

Hospice Patients and Bedsores

Pressure ulcers, which are also known as bedsores, are very common among hospice patients, with over 40% of them experiencing them. Despite insistent preventive measures, and usually as a result of diminished muscle, cell, and immune function, among other factors, severely ill patients experience compromised response to healing.  For these patients, the development of bedsores may be a visual biological indicator that their severe illness has overwhelmed the body and it is important to note that the breakdown of skin is not fully preventable or treatable.

It is a possibility that once bedsores develop in terminally ill patients, family members may see this as a failure of the interdisciplinary team or the family caregivers themselves to provide adequate care.  Furthermore, their response, oftentimes being emotional, can lead to demands that are jeopardizing to the patient’s plan of care that is rooted in comfort.

Nonetheless, attempting to prevent and treat these concerns cannot get in the way of the hospice tenet of providing comfort-based care.  Research shows that comfort should overrule preventive measures in situations where advanced illness causes patients to be more comfortable in a particular position.  If the hospice interdisciplinary team determines that regularly scheduled patient movements increase their pain, these movements may be suspended.

Other Wounds Common in Hospice

Since hospice teams care for such an extensive variety of patients and conditions, there is an equally wide variety of wound types that they encounter, such as arterial insufficiency wounds, diabetic ulcers, venous ulcers, and tumors or fungating lesions.

Risk Factor Evaluation and Preventive Measures

Upon admission, conducting a comprehensive risk assessment is crucial, and needs to include a check of the patient’s entire body.  Bedsores are caused by both internal and external factors, including the lack of mobility, cognitive function deficiency, an  inability to verbalize discomfort or sensations like numbness, chronic sickness, aging and poor nourishment.

After the risk factors have been identified, the best practice is to prevent wounds from developing in the first place.  Measures for prevention include, but are not limited to consistently inspecting the skin of the patient and observing for appropriate moisture maintenance.  Also, suitable positioning, proper techniques for transfer, and nutrition are crucial with regard to the patient’s comfort.

Avoid pressure on the heels and bony prominences of the body, and use positioning devices whenever feasible. As always, remember to document the condition of the skin after assessment.

Staging (Categorizing) Wounds

The National Pressure Advisory Panel established the following wound stages, (NPIAP, 2017):

• Stage I—Non-blanchable erythema of intact skin: Intact skin with a localized area of non-blanchable erythema, which may appear differently in darkly pigmented skin. Presence of blanchable erythema or changes in sensation, temperature, or firmness may precede visual changes. Color changes do not include purple or maroon discoloration; these may indicate a deep tissue wound. 
• Stage II—Partial-thickness skin loss with exposed dermis: Partial-thickness loss of skin with exposed dermis. The wound bed is viable, pink or red, moist, and may also present as an intact or ruptured serum-filled blister. Adipose (fat) is not visible and deeper tissues are not visible. Granulation tissue, slough and eschar are not present. These injuries commonly result from adverse microclimate and shear in the skin over the pelvis and shear in the heel. This stage should not be used to describe moisture associated skin damage (MASD) including incontinence associated dermatitis (IAD), intertriginous dermatitis (ITD), medical adhesive related skin injury (MARSI), or traumatic wounds (skin tears, burns, abrasions). 
• Stage III—Full-thickness skin loss: Full-thickness loss of skin, in which adipose (fat) is visible in the ulcer and granulation tissue and epibole (rolled wound edges) are often present. Slough and/or eschar may be visible. The depth of tissue damage varies by anatomical location; areas of significant adiposity can develop deep wounds. Undermining and tunneling may occur. Fascia, muscle, tendon, ligament, cartilage and/or bone are not exposed. If slough or eschar obscures the extent of tissue loss, this is an Unstageable wound. 
• Stage IV—Full-thickness skin and tissue loss: Full-thickness skin and tissue loss with exposed or directly palpable fascia, muscle, tendon, ligament, cartilage or bone in the ulcer. Slough and/or eschar may be visible. Epibole (rolled edges), undermining and/or tunneling often occur. Depth varies by anatomical location. If slough or eschar obscures the extent of tissue loss this is an Unstageable wound. 
• Deep-Tissue Injury—Persistent non-blanchable deep red, maroon or purple discoloration: Intact or non-intact skin with localized area of persistent non-blanchable deep red, maroon, purple discoloration or epidermal separation revealing a dark wound bed or blood filled blister. Pain and temperature change often precede skin color changes. Discoloration may appear differently in darkly pigmented skin. This injury results from intense and/or prolonged pressure and shear forces at the bone-muscle interface. The wound may evolve rapidly to reveal the actual extent of tissue injury, or may resolve without tissue loss. If necrotic tissue, subcutaneous tissue, granulation tissue, fascia, muscle or other underlying structures are visible, this indicates a full thickness wound (Unstageable, Stage 3 or Stage 4). Do not use deep tissue wound to describe vascular, traumatic, neuropathic, or dermatologic conditions. 
• Unstageable—Obscured full-thickness skin and tissue loss: Full-thickness skin and tissue loss in which the extent of tissue damage within the ulcer cannot be confirmed because it is obscured by slough or eschar. If slough or eschar is removed, a Stage 3 or Stage 4 wound will be revealed. Stable eschar (i.e. dry, adherent, intact without erythema or fluctuance) on the heel or ischemic limb should not be softened or removed. 

Basic Principles of Wound Care

It is imperative to first establish an effective plan for wound care that includes determining the prognosis of the patient, their condition and the potential they have for their wound(s) to heal. For example, it would be fitting to have a less aggressive approach for a patient nearing end-of-life, or when it is clearly displayed that it is not realistic they will heal.

Setting appropriate goals that are determined by the prognosis, condition and potential for healing is essential, and within hospice care, these goals might include:

• Prevention of complications with wounds (i.e. infection or odor)
• Prevention of further skin breakdown
• Minimization of harmful effects on the patient’s overall status as a result of wound(s) 

During the process of creating patients’ care plans, it is imperative to consider, and furthermore, incorporate their condition and their wishes.  This plan needs to be re-assessed regularly (typically biweekly) to ensure that it is still appropriate for the patient.  When a wound does not heal it does not always mean that other methods or treatments are necessarily more fitting, or that the interdisciplinary team should try all other treatment options.  The team should rather work to differentiate the plan to utilize the most appropriate options for that given patient based on their condition and wishes at that given time.

A standard plan for wound care will include the following:

• Cleaning the wound of debris
• Possibly debridement
• Absorption of any excess exudate
• Promotion of healing
• Treatment of infection
• Minimization of any discomfort

When a patient is in hospice care, wounds can be significantly stressful for the patient and family with regard to the associated pain, appearance, odor and furthermore the perceived implications of wounds. To maintain the goal of hospice of comfort-focused care, the interdisciplinary hospice team needs to function with diligence and detail to assess and document wounds and any changes to the patient’s condition while also conducting appropriate methods for prevention, and establishing and updating the care plan in consideration of the patient’s needs and wishes.

By decreasing the incidence and intensity of wounds and diminishing their impact, the hospice team provides an improved quality of life, and fosters an environment that allows for a peaceful death experience for both the patient and their loved ones.

References

The National Pressure Injury Advisory Panel. (2017). NPIAP pressure injury stages. Retrieved from https://cdn.ymaws.com/npiap.com/resource/resmgr/online_store/npiap_pressure_injury_stages.pdf

Research has shown that a great majority of patients desire to know the truth about their condition, (Buckman & Kason, 1992). When patients are not provided with this information they report feeling alone and abandoned. The challenge is for health care providers to take the time to have these important conversations with patients and their families, as well as consistently provide updates to statuses, given that today’s environment often leaves clinicians constrained with regard to their time, (Kinzbrunner & Policzer, 2011). 

Healthcare providers have the opportunity to offer a precious and invaluable gift to patients and their families by discussing the patient’s options near the end-of-life, while still allowing the patient to enjoy quality of life.  A patient who is informed, and has an understanding of the options they have along with what hospice care can provide will have a stronger sense of control in their situation.

Similar to evaluating the health history of a patient or facilitating a physical, introducing pertinent end-of-life conversations with patients is an attainable skill that can be learned.  When done so effectively and thoughtfully, these discussions allow for stronger relationships between physicians and their patients, and improve the chances that patients will decide the most optimal treatment options, including hospice care.

Obstacles Within Talking About Death

• Worry with regard to the patient’s reaction:  Regardless of the fact that patients want to know the truth about their conditions, they might have a strong emotional reaction or physical outburst initially related to the thought of having limited choices, a loss of control, a deteriorating lifestyle, changes in their image of self, and ultimately losing their life, (Kinzbrunner & Policzer, 2011).  Although these more intense reactions might trigger discomfort for the provider, properly preparing for the conversation along with specific consideration, or even empathy for the patient’s perspective will help to deescalate the situation.

• Worry with regard to the provider’s reaction:  The provider may be concerned about appropriately responding to a patient’s anger, anxiety or sorrow.

• Idea that the provider won’t be able to “do enough”:  Providers can even strengthen the relationship with the patient through exhibiting compassion and honesty while recognizing their own thoughts and feelings regarding the decline of a patient notwithstanding all efforts.  Discussing the options for end-of-life care is the next practical step in the continuum of care for the patient.

• Leading such discussions triggers anxiety:  This obstacle is the easiest to conquer when the provider takes the time to become informed on how to effectively conduct end-of-life conversations thoughtfully and with compassion and empathy.  This learned skill will not only assist patients in making informed decisions, but also ease the discomfort of the provider.

SPIKES has six pragmatic aspects:

In case a person is diagnosed with a terminal illness, or is approaching death and is unable to communicate for themselves, end-of-life experts recommend that the following steps be taken proactively to ensure that the patient’s wishes are actually acknowledged and executed.

• Setting – Decide on a private setting where you can sit in person with the patient and their loved one.  If the patient does not speak the same language as you, depend on a professional interpreter as opposed to a family member.  
• Perception – Gauge the perception of the patient by asking how much they know, perceive or suspect before commencing the conversation.
• Invitation – Discreetly invite the patient to provide information about their willingness to receive more information, by asking if they want to discuss test outcomes, treatments, etc. If the patient does not respond favorably, recommend that you try having the discussion at another time, possibly later that day or the next, and then make sure to follow up with them at the decided time.
• Knowledge – Provide information directly and concisely, and once you have opened the discussion, stop talking in order to listen to the patient’s responses, thoughts and emotions.
• Empathy – Acknowledge, and identify with the patient’s emotional reaction in a compassionate and kind way that suggests you not only understand, but appreciate their response and are genuinely concerned about their future as well.
• Summation – Summarize the information and recommend they consider hospice care.

“SPIKE” Your Communication Skills and Your Confidence

As you follow the SPIKES system, you can increase your ability to facilitate effective discussions about end-of-life treatments and embracing hospice, (Buckman & Kason, 1992).

This will help you assess:

• A patient’s understanding about their condition
• A patient’s readiness to discuss end-of-life overall
• The optimal way to adjust to a given patient’s response
• The significant value of both silence and observation
• How best to interpret a patient’s reaction, regardless of its appropriateness
• How to inform your patients in a way that exhibits empathy
• The role hospice care can play in maintaining hope, comfort and dignity

The Role Hospice Plays

Hospice plays an essential part with regard to the satisfaction that a patient and their family experiences at the end-of-life. Optimal hospice care is supplied for months, as opposed to weeks or days. Hospice care can assist in managing pain and symptoms, providing comfort, and addressing the spiritual and emotional needs of the patient and their family when intensity and/or side effects of treatment start to surpass any anticipated advantages.

Hospice care provides patients a sort of gift of time, enabling them to visit with loved ones, enjoy time outdoors, experience family milestones and to get affairs organized.

References

Buckman, R. & Kason, Y. (1992). How to break bad news: A guide for health care professionals. The Johns Hopkins University Press.

Kinzbrunner, B. M. & Policzer, J. (2011). End-of-life-care: A practical guide. McGraw Hill Professional.

Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & Kudelka, A. P. (2000). SPIKES – A six step protocol for delivering bad news: Application to the patient with cancer. The Oncologist, 5(4), 302-311. https://doi.org/10.1634/theoncologist.5-4-302.