An insider’s recommendations for managing end-of-life care more effectively
By Kathy Gurland, LCSW
“Why would you want to be around death so much?”
This was the question I encountered repeatedly throughout the eight years I provided hospice services to individuals throughout New York City as a social worker and then as a clinical coordinator. My response was always the same: I considered it an honor and a privilege to be assisting families during such a pivotal time. But instead of the customary back-and-forth people have about their jobs, most of my social interactions came to an abrupt halt.
The fact that my career choice incited such discomfort speaks to our tendency to avoid talking about death and dying, despite its inevitability, and also to the misconceptions and the lack of knowledge about the many advantages of choosing hospice services. Together these two issues have led to what research reveals is a disproportionate number of people dying in hospitals while undergoing aggressive and futile medical interventions despite the consensus that most Americans want to die peacefully in their own homes.
You can, however, prevent yourself and your loved ones from becoming part of this unfortunate trend. The first step is to become more informed about hospice and end-of-life care, which will assist you in making empowered choices and effectively managing this vital chapter in all of our lives. The second step is to follow up with this information and to have those conversations that, though uncomfortable, are absolutely essential for each and every one of us.
What Exactly Is Hospice?
Hospice, which emerged from palliative care ideology, is defined as comfort care and support for patients and families facing a life-threatening illness. The focus of these services is not on curing the disease but rather on increasing quality of life by managing the full range of symptoms and providing psychosocial and spiritual support for the duration of the illness. And if requested, bereavement services can be provided for up to a year following a death.
Experienced hospice clinicians bring a specialized skill set and extensive knowledge about the dying process to their work with patients and families. Hospice team members address the patient and family dynamic holistically, not just medically. Their focus encompasses quality-of-life needs that medical teams may overlook or are not equipped to address. They are aware of what to anticipate as end of life approaches, and they assist in remedying unresolved problems. They know how to sensitively introduce the difficult conversations and are skilled at addressing the accompanying fears and doubts that death invokes in all of us.
In the best-case scenarios, hospice clinicians collaborate with families in facilitating a peaceful death. The encouraging scenarios that I witnessed proved to me that it is indeed possible to leave this planet without pain and suffering, and that awareness provided great comfort to me and to those I love. And it is those heartening outcomes that fuel the important mission of hospice workers everywhere.
Hospice Is Available for Everyone
Unfortunately, almost no one knows that hospice is a benefit much like other health insurance benefits. And what makes it exceptional is that it is patient and family driven—meaning that the patient and his or her “family” (as defined by the patient) guide the plan of care. Hospice staff do not dictate what services you must have, nor do they decide how you should utilize their services or impose any unneeded interventions that a family does not request. It is not a one-size-fits-all benefit.
Throughout my hospice tenure, I was repeatedly impressed by the diverse ways that families integrated hospice services and how uniquely each family responded to and addressed their end-of-life priorities.
Most importantly, the hospice benefit is available to everyone, not just those who have high-end insurance policies. Medicare and Medicaid and almost every HMO include hospice as a benefit, and even individuals without insurance are entitled to hospice care from any institution that is not-for-profit or is state or federally funded. (For additional details concerning the hospice benefit, see sidebar “Hospice Basics.”)
Common Myths and Misconceptions Surrounding Hospice
When educating yourself about hospice and end-of-life care, what is equally important is to be aware of the many misconceptions that are commonly held to be true about hospice when in fact they are false. Here are just a few of the many inaccurate assertions that I still hear today.
Myth: Hospice is an irreversible decision.
Sadly, the most common perception of hospice is that it is a death sentence imposed by a medical authority. As a result, hospice is popularly equated with “giving up,” which can cause patients and families to feel hopeless. The truth is that we all have the option to elect this valuable benefit and, unbeknownst to most, we can elect to terminate it as well.
Two examples from my experience demonstrate just how adaptable the hospice benefit can be. In one case we had a gentleman on our hospice program for 14 months, with end-stage congestive heart failure, whose name was on a transplant list. Fortunately, a heart finally became available, so he discontinued our services. In another case a 35-year-old woman with two young children, who was diagnosed with end stage melanoma, entered our program so frail from chemotherapy that she could barely get out of bed. After nine months of receiving care in her home, however, she greatly improved and became physically and emotionally strong enough to qualify for a clinical trial. She continued to receive hospice services up until the week before she enrolled in the trial.
Myth: Patients who live beyond six months can no longer receive hospice services.
There is no six-month limit for receiving hospice services. For a patient to be referred for hospice services by a medical doctor, however, they must have a life-threatening diagnosis that, under normal circumstances, makes it highly possible or probable that they could die within a six-month framework. The six-month parameter is merely the criterion used for meeting eligibility and for continuing to receive ongoing services. Once a patient has signed onto hospice, if the patient’s functioning level has not exceeded the criteria of the initial prognosis and the disease is still life-limiting, the benefit is reviewed and renewed quarterly.
Several of our hospice patients were with us for as long as 20 to 26 months. Many of them were able to go to the movies, restaurants, and weddings or take short vacations yet were still eligible to receive hospice services; but there were situations that evolved that clearly led to a necessary end of eligibility. I’ll always remember one patient, a serious cyclist, who confessed one day, “I did it! I rode 5 miles today.” Obviously, we had to break the news to him that it was time to say good-bye to hospice—but what a great reason to no longer be eligible!
Myth: Hospice workers are focused only on death.
Unfortunately, those of us in hospice hear this accusation frequently, but it is simply not true. Unlike most professions, no one grows up thinking, Someday I want to work with people who are dying. Working in hospice tends to be a calling rather than an aspirational career goal. Many hospice workers, including myself, are drawn to the field as a result of their personal histories of loss, which fosters a deep empathy for others at the end of life.
We are not invested in ushering in the end of anyone’s life. Our primary focus is to promote holistic quality of life by maximizing comfort care, monitoring symptom management, and supporting the psychosocial and spiritual well-being of our patients and their families.
The intensity of hospice work can result in emotional fatigue that occasionally manifests while on the job if hospice workers are not diligent about getting support themselves. As with any medical situation, if you encounter a hospice staff member who is less compassionate than you would expect, it is your responsibility to self-advocate and address your concerns through the proper channels.
Myth: Families have no choice when it comes to which hospice they can use.
Just as with any other medical service, you do have a choice. If there is more than one hospice in your local area, call all of them with your list of questions and needs. Shop around for a hospice as you would for any vital service you are considering. Be an educated consumer: it can often make a huge difference.
I had a private client from California who desperately wanted to leave the hospital and needed immediate home care hospice services. The hospice recommended by her hospital couldn’t admit her until after the weekend. I researched the options in her area and discovered that there were in fact two other local hospices. After just a few calls, I located a hospice that would complete her discharge and home care admission that very same day.
And don’t overlook the for-profit hospices. They are not usually recommended by hospitals, but often for-profit hospices can actually afford to offer more services (such as more home health aide hours, caregiver massages, and music therapy) than the nonprofits. When shopping around, interview these hospices as you would a nonprofit and ask the exact same questions; you might be pleasantly surprised.
Myth: Only the doctor can decide when it is time for a patient to begin receiving hospice services.
Nothing could be further from the truth, yet this myth is still widely accepted as doctrine. Bottom line: doctors may be reluctant to refer patients to hospice because they are trained to cure. For many, suggesting hospice feels like they have failed in their mission and are giving up on the patient and family.
But the doctor is not the person facing his or her mortality. This emotionally charged reality and the complex decisions that accompany it are exclusively yours or your loved one’s. As difficult as it may seem, it is often the patient or family who needs to approach the option of hospice care with the doctor. If you have a trusting relationship with your primary care doctor, be the one to initiate the conversation. If not, seek out a professional whom you do trust and who will be honest and have your best interests at heart. End-of-life care decisions need not be made through default. They can be very empowering if you are the one who is making them.
Sooner Is Better Than Later
To remark that end-of-life care issues are complex and delicate is clearly an understatement. Reflect for a moment on the range of emotions you likely experienced while merely reading about this topic—many of which were no doubt unsettling. Now imagine having to process all this information and make decisions in a real-life situation.
Any mental health professional will tell you that it is virtually impossible to operate with sound judgment when you are flooded with emotions. Yet far too often, families postpone having end-of-life discussions until death is imminent, putting them at a great disadvantage for making well-grounded decisions.
I always advise families facing life-threatening illnesses to take care of the tough decisions early on so that they can focus on the more important task of living as qualitatively as possible. Recently, this “sooner is better than later” theory has also been shown to improve medical outcomes, not just psychological and emotional ones. For example, studies have shown that patients who are referred to palliative care services and elect hospice earlier in the trajectory of the disease actually lived longer than their counterparts.1
In contrast, another study indicated that when families wait until the last minute to choose hospice, the services provide little or no comfort and fail to serve any beneficial purpose.
The most gratifying hospice experiences I had were spending months, not days, with my patients. Being in their own homes surrounded by familiar smells and sounds, being cared for by family and friends, and knowing that the vital decisions had been made, they markedly improved, knowing that the full focus was on living well for as long as possible.
Minimize Your Regrets
There are no certainties in life, but we are all aware that eventually we need to face the inevitable. Although it can be emotionally taxing, we owe it to ourselves and to our loved ones to come to grips with end-of-life care planning. With accurate information and a clear head, we can make confident choices. We need not leave such powerful life options in the hands of the medical community. We have the right to change our minds, take the initiative, become more actively involved, and feel empowered. When we use solid decision-making skills, we allow ourselves the opportunity to make choices that will promote more-satisfying positive results and minimize regrettable negative possibilities. And there can be no more important time to minimize our regrets than when it comes to our mortality. _
Reference
Temel, JS, Greer JA, Muzikansky, A. Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine. 2010;363(8):733-42. doi: 10.1056/NEJMoa1000678.
Locations
Home hospice. Hospice services are provided in the patient’s home.
Inpatient hospice. This is a designated hospice unit or floor within a local hospital. In-patient services are arranged for short-term situations when medical interventions are deemed necessary, to relieve the family from caregiver distress or for a pre-
arranged respite-care stay.
Freestanding hospice. This is a facility designated solely for hospice patients for longer-term stays. These are quite rare, but ask if one exists in your area.
Skilled-nursing facility (SNF). Hospice services can also be provided in a nursing home (SNF). The hospice staff does not replace, but instead collaborates with, the nursing-home staff. It is advisable to discuss this option with the SNF staff to find out if they have a good relationship with a local hospice—or talk with other families in the SNF who have brought in hospice staff.
Staff
Medical doctor (MD). The medical director or hospice doctor reviews all patients’ medical histories and oversees all treatment plans. Though it is not standard policy for hospice doctors to visit every family, they are available for phone consultations that can be arranged through the assigned nurse. Should your family feel that a doctor’s intervention is truly necessary, however, prepare a list of reasons before calling to ask for a visit. Additionally, hospice doctors often work in collaboration with a family’s primary care doctor if requested.
Nurse (RN). A professional registered nurse trained in palliative care standards is assigned to each family. Their visits are scheduled according to the patient’s and the family’s needs. Visits are often more frequent in the beginning (once or twice a week) and may taper off (every two weeks) if the situation stabilizes, but they can be increased when it is medically needed.
Social worker (SW). A licensed clinical social worker, also trained in psychosocial and emotional palliative care ideology, is assigned to each family, and visits are scheduled similarly to nurses, on an as-needed basis.
Chaplain. Spiritual/religious support staff, who are trained in diverse doctrines. Chaplain visits are not compulsory and are scheduled only if requested by the family.
Volunteers. Lay people volunteers are often available to visit patients or families to provide companionship.
he training and the availability of volunteers varies from hospice to hospice. Typical services that volunteers can provide include reading to the patient, playing cards or games, accompanying the patient on a walk, and providing relief for the caregiver. To help ensure a good volunteer match for your loved one or the primary caregiver, describe personal qualities that might be compatible with the patient or caregiver; explain how you would utilize the volunteer’s visits, and ask if he or she can commit to a length of time. Some of my favorite volunteers developed great supportive friendships over time with their assigned patients and families.
ip: If you feel that any staff assigned to your loved one is not a good fit or is not performing the duties you were told to expect, do not hesitate to call the hospice and inform them nicely. It is your right as a hospice beneficiary.
Services
Initial intake and assessment. During the mandatory initial intake and assessment period, which requires that the patient and the caregivers meet with hospice staff in the hospital or in the home over a couple of days, the goal is to gather the necessary information to create a plan of care and assess the family’s needs. A nurse or social worker spends this time with the patient and the family, completing a medical and family history, a home safety assessment, lists of medications and medical equipment needs, and a caregiver evaluation. It is important to know that the RN or SW who completes this admission assessment will not necessarily be the RN or SW who will be assigned to the patient; this can be confusing, so ask if that is the case during the intake.
ip: Be prepared to answer the same questions several times. It is very helpful to prepare a list of medications, all relevant phone numbers, contact information, and legal documents and make copies to give to the staff. It will save everyone a lot of time.
In-person visits. See hospice staff descriptions (above) for whom you can expect to be visiting the patient or caregiver.
ip: Initially, request more visits than you think you may need. It is easier to reduce scheduling of staff than it is to increase it. You can always call and request fewer visits.
Durable medical equipment (DME). DME includes any equipment for the home that has been deemed necessary, such as a hospital bed, walker, wheelchair, commode, bedside table, incline chair, or cane. It will be delivered to the home following the intake assessment. The cost of these rentals is covered by the hospice benefit.
Home health aide (HHA) services. Services provided by home health aides from a licensed agency are also included in the hospice benefit, but the number of hours that a family receives varies from hospice to hospice. On average 12 hours per week can be expected, but it never hurts to ask for more. Be creative with the hours that you are offered and try to schedule them to suit your particular needs.
e aware that HHAs are not permitted to administer medications, nor are they allowed to perform services for anyone other than the patient. The assigned RN supervises the HHA and will discuss the duties and the plan of care with you. Additionally, if your loved one’s needs exceed the hospice’s allotted HHA hours, be prepared to get more caregivers involved or to pay privately for those additional hours.
Medications. All medications related to the patient’s hospice diagnosis are covered by the benefit and are delivered to the home via the hospice’s contracted pharmacy. Any medications needed for health issues not related to the hospice diagnosis (such as medications for diabetes, asthma, or high cholesterol) are not included in the benefit, so families need to obtain those through their own pharmacy as per usual.
24-hour hotline. All hospices have a phone number that families can call 24/7. Some hospices may also have on-call staff that can provide home visits 24/7. It is very important to know what the hospice protocol is should your loved one need medical attention outside of regular business hours, so ask about this during the initial intake and make sure that everyone involved in the patient’s care is aware of that protocol.
Ancillary services. Some hospices have ancillary staff that can provide specialty services and complementary therapies such as massage or music, art, or pet therapy; and family members are invited to be present during these visits. Again, ask during the initial intake and make note of these services for the future.