Hospice helps. I mean this truly. When a loved one enters hospice, you may be uncertain what to expect and what your continued role in their care may be.
The only certainty in life is death. We all deserve to die with dignity. Hospice care provides comfort and support at end of life, which is often required even for individuals who otherwise led completely healthy lives. Death in itself can be an uncomfortable and painful process — for everyone involved — so hospice steps in to do whatever is necessary to ease the pain and facilitate peaceful passing.
Here are a Few Things You Should Know About Hospice
It may feel hard to reconcile a loved one entering hospice as the beginning of the end. Unfortunately, it is in most cases. But it’s not a surrender. It’s not giving up or not caring. It’s simply a way to ensure your elder and the entire care-partner team transitions to end of life with as much comfort and compassion as possible.
1. Comfort First
Hospice aims primarily to deliver comfort care. A body in its final stages will gradually (or not so gradually) shut down. Common end-of-life conditions like dementia or kidney failure may not be painful by themselves, but their effects may be as the person loses appetite and toxins build up in the body. Other serious conditions like cancer or cardiopulmonary diseases may be extremely painful in final stages.
But hospice doctors and staff may prescribe and administer powerful pain medications that would otherwise be avoided in most clinical situations. You see, there’s no concern for addiction or other potentially damaging side effects at end of life. Does morphine end the pain? Sure. No problem (when professionally administered by hospice).
2. Time Limits
It’s important not to think of actual time limits when it comes to hospice care. While doctors must give a professional opinion that an individual will likely die within six months to enter hospice care, that doesn’t mean there’s a six-month deadline. Loved ones may persist on hospice care for months or even years following initial enrollment. Make no mistake, the individual’s condition remains terminal, but it’s impossible to project exactly when they may die.
Doctors can recertify your loved one in hospice to deliver comfort care, services and support as long as necessary.
3. At-Home Care vs. Institutional Care
Many may think end-of-life care can only be delivered in a hospital, nursing home or other institutional setting. That’s not true. In fact, many individuals, families and care-partner teams prefer hospice care at home. If planned early enough, the home may be an ideal environment to receive hospice care. Your elder may wish to be home, in their own bed, surrounded by memories of raising a beautiful family.
There’s no place like home, after all.
Hospice assigns dedicated staff to be present or on call 24/7, leaving no need unaddressed. Doctors, clinicians and nursing staff will check in regularly to assess everyone’s needs and adjust accordingly, regardless of where care takes place. Hospice makes every effort to address medical needs at the location, avoiding unnecessary hospital stays to stabilize medical emergencies. Discuss with your loved one their desires for emergency care under hospice. Sometimes a nursing home environment may be the most sensible option.
4. Team Effort
Your loved one will not suffer alone. Nor will you. A hospice doctor or nurse will not act alone. Nor will any family member or friend alone make decisions. In several decades of patient advocacy, I’ve embraced care-partner team building as vital to any strong life-care plan. Although the common vernacular is “caregiver,” we prefer “care partner” — and, yes, there should be more than one for a wonderful team effort.
At the center of the care-partner team is your loved one. Person-focused language shies away from calling them a “care recipient” or anything of the sort. It empowers them to take charge of their own care (as long as possible). But it also acknowledges their own responsibilities within the care-partner team. Just as a son may be in charge of cooking and cleaning while a niece manages finances, your loved one may be responsible for honesty in assessing care tactics.
There’s no role too big or too small on a care-partner team.
5. Counseling & Respite
When a loved one begins hospice, it’s understandable for those close to feel distinct psychological and emotional stress. You may feel extreme grief and sadness. Or perhaps distress and even anger that someone so beloved will soon be leaving this world. Hospice can coordinate counseling services to talk through strong feelings. Even a one-on-one conversation or caring touch shared between care partners and hospice staff can make all the difference.
In the meantime, care partners still play significant and time-consuming roles in care. Everyone needs a break. Everyone has other responsibilities. Hospice staff can be present whenever needed or coordinate respite services for everyone to step away briefly and attend to personal affairs.
6. Financial & Legal Responsibilities
Hospice care is covered entirely under Medicare, Medicaid and most major insurances. Yet there may be many financial and legal loose ends to finalize. (Hopefully, your elder and the care-partner team have planned such affairs well in advance, because I’ve rarely seen more senseless confusion and resentment than when they’re handled hastily — or worse, when contested.)
There are numerous legal and financial documents care-partner teams should finalize early as possible. A loved one entering hospice care often lacks the capacity to sign off on important decisions, calling importance to matters like power of attorney, advance directives, health care proxies, property and finances.
Time is of the essence. Act quickly and sensibly. Allow your loved one — and everyone else involved — peace and dignity in death and beyond.
7. Religion & Faith
Last, but not least, hospice agencies value and honor religious and faith beliefs. Especially at end of life, individuals and families embrace spirituality in preparation for what lies beyond. This may have a marked impact on the style of care received to final rites and memorial services.
Hospice will coordinate religious services, counseling and regular visits from clergy of any faith. From serving Mass or holy communion to simply sitting and talking, the spiritual aspect of hospice care can be the most calming and therapeutic. It helps to make sense out of life and death.
Considering Hospice Care? We Can Help With That
Preparing for and entering hospice care may seem daunting. Many processes and emotions can muddle what should be a natural and expected transition through end of life. As we’ve said: hospice is not a surrender. It’s dignity.
If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life care planning including hospice and palliative care. We’re happy to provide referrals and guide the process in a caring and compassionate way.