What do you think of when you hear the term “hospice?”
For most, the word “hospice” invokes an uncomfortable or unsettling feeling - particularly if you or a loved one is facing a serious illness. I was certainly no different. As a young physician, I had a lot of anxiety when referring my patients for hospice care. I knew my anxiety was unfounded - as once my patients were enrolled in hospice, they generally received excellent multidisciplinary care. In fact, most patients and their families warm up to the providers quickly and ultimately have a great experience.
It took me years of clinical practice to finally realize why we all “fear” hospice. When one accepts hospice care, one accepts the reality that they have a seriously illness and are in fact, mortal. Interestingly enough, I have also found that once we have the courage to accept this difficult reality, it is hospice that actually helps us to answer: “Where do we go from here?”
As a physician, I urge members of our community to take a closer look at hospice care and you’ll see that it is actually about living, not dying. It is about living as long as your body will allow, with minimal pain of other debilitating symptoms. It is about living on your terms, with dignity and with as much freedom as possible. It is about using the limited time that we all have thoughtfully and productively. And it’s about supporting patient’s families by offering emotional and spiritual support and much-needed stress relief for caregivers.
In many cases, I have heard patients and family members say they wish they had considered hospice services sooner. Despite the marked increase in the use of hospice care, many people, including healthcare professionals themselves, seem to have misconceptions about what hospice care offers and how it really works. I’d like to take a moment to clarify some of these misconceptions and help families to better understand not only how, but when to enlist the help of hospice care services.
Did you know that hospice provides a team of experts and professionals to support each and every patient? Each team includes a hospice physician, like myself, who works directly with your own primary care physician and a team of specially trained nurses who help patients manage a variety of symptom. Other members of the hospice care team usually includes an aide who assists with daily care; a social worker to help patients and families to cope with emotional and practical issues that may arise; and a chaplain, who offers non-denominational support for issues such as faith, fear, forgiveness or spiritual questioning. The dedicated hospice care team is available to the patient and family throughout their care.
Hospice will also arrange and pay for any needed medical equipment, such as a custom hospital bed and medications for the terminal illness, all with 24/7 patient support. Hospice provides incredible one-to-one care that delivers peace of mind to families when it’s needed most. Another welcome benefit of hospice care is provided by community volunteers, who provide companionship for patients and relief to caregivers. Volunteers visit with patients - which allows time for caregivers to run an errand or pick up groceries and prescriptions, go to the gym - whatever the caregiver may need.
According to the Journal of Pain and Symptom Management, patients with life-limiting illnesses who choose hospice care can actually live longer, and more fully, than people who do not choose hospice to help manage their illness. As an example, hospice helped a patient who was finally able to eat again after his nausea was controlled by the clinical expertise of the hospice team. For other patients, I have seen that the support and care from their hospice team enabled them to participate in major life events, such as a grandchild’s birth, a wedding, graduation or another important celebration in life.
The reality is that patients reaching “end of life” still have life, and it is life worth living. Hospice care allows them the opportunity to make the most of their time. It should not be feared, it should be embraced. Not all hospices offer the same breadth of services. You should know that you and your family have a voice when choosing a hospice care provider.
If you would like to learn more about hospice care, visit: CareDimensions.org, NHPCO.org or check out Consumer Reports, which provides excellent details on what to look for when choosing a hospice agency.
Dr. David Macdonald is a hospice physician at Care Dimensions in Danvers and a resident of Beverly.
Since 1978, Care Dimensions has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in over 100 communities in Massachusetts.