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