Why a professional care manager can be the safe bridge between palliative care and end-of-life care
Why does death seem imminent once a patient enters hospice care? (That’s not a trick question.) Under hospice care, patients are given approximately six months of end-of-life care, with an essential component being comfort care. Generally, this is not the case. Former First Lady Barbara Bush died two days after entering hospice care. Aretha Franklin, Queen of Soul and an American cultural icon, died three days after her admission into hospice care. Eugene Peterson, biblical scholar and bestselling author of The Message—a paraphrase of the Bible—died a week after being admitted to hospice care. Too often patients are not prepared for hospice care, so they do not fully experience the end-of-life care that is consistent with living fully. Instead, they often incur even more undue suffering as they continue to fight for survival. However, with a professional care manager, a trained expert in care, the level of distress experienced by patients and their families can be mitigated as they transition from palliative care to end-of-life care.
The difference between palliative care and hospice care
If you or a loved one is seriously ill, then you have probably heard the terms “palliative care” and “hospice care”. According to WebMD, palliative care is a program that “aims to ease pain and help with other problems if your illness is serious but not considered to be life-threatening for now.” For example, palliative care could help people live actively as possible with issues related to pancreatic cancer or chronic kidney disease, whereas under a hospice care program patients are not expected to recover.
In a hospice care program, patients are not expected to recover from their condition, but they can still elect to receive palliative care, especially if they are not ready to accept their diagnosis, explains Lisa Rogers, a medical social worker who has spent most of her career working in hospice care and is now a care manager at Intervention Associates.
Hospice care is also referred to as end-of-life care, where the patient usually has six months or less to live. The emphasis is on keeping the patient as comfortable as possible and managing any problems as they arise without using aggressive treatment. Though hospice care can take place at a specialized center, nursing home or hospital, this type of care is usually intended for the home.
But being at home does not necessarily reduce the physical, psychological, or emotional stress a patient and/or family may experience.
Many times, patients are not prepared for hospice care despite the fact that it is intended to improve the quality of life at the end of the human journey and allow patients to prepare for a “good death”. Though a “good death” looks different for each person, generally it involves themes such as lack of pain, religious and emotional well-being, a feeling of life completion, dignity, closeness of family, and quality of life.
Hospice care is about living as well as possible until you die.
Unfortunately, most patients stay in hospice an average of 71 days, according to a 2016 report by the National Hospice and Palliative Care Organization.
A study in the Journal of American Geriatrics shows that less time spent in hospice care deprives patients and their families of experiencing the quality of life that end-of-life care can provide.
Choosing quality over quantity
Knowing when to end palliative care or knowing how to prepare for hospice care requires education and the support of an educated community. These programs involve difficult life decisions that can become complicated and physically, mentally and emotionally stressful for several reasons:
- Culturally, it is not common to have conversations about death and dying. The American culture is focused on anti-aging.
- This lack of communication can leave a terminally ill patient without an advance directive (AD). “An AD is a living will and requires legally naming a durable power of attorney for health care (DPAHC). Living wills are legal documents that specify the medical treatments a person desires. A DPAHC is a named individual given legal authorization to make health care decisions for another individual, should they become incapacitated. Although helpful in many cases, these advance directives have their limitations due to the variability that exists regarding how thorough a patient is when stating their treatment preferences or due to complications surrounding accessibility of ADs when quick decisions must be made,” according to Mather Lifeways Institute on Aging.
- It’s almost taboo for health providers—doctors and hospital personnel—to talk about end-of-life care. Doctors are trained to fight illnesses, examine, prescribe, and operate, not how to help patients die well.
- If patients do not know how to have end-of-life conversations and doctors are not comfortable with such conversations, hospice care may be delayed, though there are clear signs such as frailty, which is one of the strongest predictors of mortality in older persons.
- Delay in hospice care can put added burden on the family if they are the caregivers.
That’s why a go-to-person such as a professional care manager is ideally suited for this type of complexity in life. You need someone who is well-educated about end-of-life care, can navigate the healthcare system, understand Medicare benefits, be an advocate, mediator, supporter—basically, your all in all.
A professional care manager safely bridges the gap between palliative and end-of-life care. Lisa Rogers describes her responsibilities this way:
Sometimes family members are so overwhelmed that they might turn down the opportunity for a professional care manager to come into the home. Besides the nurse and the home health aide, they might not feel it is necessary to sit around talking to a professional care manager (social worker) about what’s happening. But I say, as a trained professional, there’ve been times where I’ve gone into visit someone and I’ve noticed that there’s a change in condition or a concern. I have had to notify the nurse or the hospice team to make sure that they come out.
You just want to get everyone on the team on the same page and provide as much support to the family and patient. Perhaps it’s having a conversation with them about moving their loved one into a freestanding hospice unit or a nursing facility where they would receive a different level of care that’s not 100 percent on the family itself.
Working for Intervention Associates and in the medical field, I have had a lot of different challenging conversations with medical professionals and family members, [including] knowing what questions to ask or knowing how to guide the family through any process, even if it’s not hospice but just any difficult decision, such as is this person safe to leave the hospital? Maybe, they’re still in the hospital when they’re getting pushed out because they’re “medically stable” for discharge, but there’re still some things that are pending and we’re not comfortable with. So, trying to advocate for them to stay until things are resolved including navigating and knowing the difference between Medicare and Medicaid. What benefit is it to them having someone under Medicare? What are they entitled to if they’re going home and if they need 24-hour care? Setting up that 24-hour care and checking in on those caregivers to make sure that they’re doing what needs to be done for that particular client are just the tip of the iceberg.
Rogers encourages families to take the route of a professional care manager, so that they can focus on being the loved ones—the daughter, son or even parents—while professionals like her help patients cross peacefully to the other side as families and friends say their good-byes.