Hospice Care: Making Tough Decisions at End of Life
By Maureen Rulison
Caregiver Support and Resources, LLC
We often discuss difficult end-of-life care decisions. They can be tough even when you’re prepared. That’s why we stress the importance of life care planning, so we’re not caught off guard when overwhelming decisions like when to enter hospice care become very real scenarios.
As our loved ones age in good health or bad, end of life exists in our minds, but often as only a vague concept. Something that could be years away – and can be dealt with then. But it’s an entirely different feeling when the end is near and the family and medical professionals involved in care must facilitate a comfortable, peaceful and dignified passing.
That’s easier said than done. The sad reality is that death is often an uncomfortable, uncertain and even painful process. Even more so when you’re not prepared for difficult care decisions and for the powerful emotions of sitting vigil as a loved one struggles through life’s final stage.
So Let’s Not Wait Until the Last Minute to Consider Hospice Care
It’s difficult for some to know where to begin building an effective and considerate life care plan, for everyone from the care recipient to supporting care partners. So why not address the most uncomfortable elements – like hospice care and other end-of-life scenarios – early in the process?
It’s important to have a clear understanding of what hospice is and what it offers, in addition to building a strong support system.
What is Hospice Care?
Hospice care provides comfort and support to individuals facing a terminal illness. Sometimes they’re simply dying from old age. In most cases, to qualify for hospice care, a doctor must determine a life expectancy of six months or less.
Hospice is focused on providing physical, emotional and spiritual support to both the individual, their family and the rest of the care-partner team. This care is sometimes provided in the person’s home, but can also be provided in a hospice facility, hospital or nursing home.
The goal of hospice care is to provide the highest quality of life possible “on the way out.” This type of care is person-centered, meaning that the individual and their loved ones are the focus of care and decision-making. It’s a team approach that involves a variety of health care professionals including physicians, nurses, social workers, chaplains and trained volunteers to ease pain and suffering.
What Does Hospice Care Offer?
Hospice care offers a wide range of services to individuals and their care partner teams. Some of the services offered include:
1. Pain Management
Hospice care provides individuals with pain management and symptom control. The dying process – even in individuals who may have otherwise been healthy most of their lives – is often dreadfully painful and sickly. Symptom management may include powerful medications that doctors would otherwise avoid to address pain, shortness of breath, nausea and toileting problems.
2. Emotional Support
Emotions at end of life are powerful. Individuals and their families often require support and counseling to make sense of the dying process and to accept the inevitable outcome. Hospice agencies provide support from a team of trained professionals, as well as from volunteers who are available to listen and provide comfort.
3. Spiritual & Cultural Services
As people consider hospice care, we’re not sure why so many in the life care planning process overlook this critical step. So many of us have strong religious and cultural convictions. Hospice care provides these services to individuals and their families, based entirely on what their beliefs and customs dictate. This can include chaplain visits, bringing in desired religious leaders for services and counsel, as well as support from congregational communities and volunteers.
4. Practical & Daily Living Assistance
The dying process doesn’t mean life stops for everyone. There are still daily household chores and other life responsibilities that members of the care partner team must tackle. But, as we know, even little things like doing dishes and preparing meals can be tremendously difficult under stress and bereavement. Hospice care provides practical help with daily tasks such as bathing, dressing or getting groceries.
5. Bereavement Support
A loved one’s death isn’t the end of the process. Their presence may still be felt – quite powerfully – as remaining loved ones learn to cope with loss. Hospice also provides bereavement support. This includes care during the grieving process and after the individual has passed away.
When is the Right Time for Hospice Care?
The best life-care plans factor hospice care either as an inevitability or a contingency. Even if it may be difficult to swallow, it’s often easy to anticipate the health of our loved ones in old age based on medical history, chronic illnesses and genetics. Having those conversations early can more easily and calmly assess end-of-life care decisions, factoring our loved one’s wishes when they’re able to speak for themselves.
Don’t wait to discuss hospice care for the first time when your loved one is actively dying. Waiting too long can result in hasty and haphazard planning; overlooking health realities and last wishes.
As we said, hospice care is typically reserved for when the individual has a life expectancy of six months or less, and their focus has shifted from working to get better to seeking comfort and quality of life. There are several factors that should be considered when deciding the right time for hospice care:
1. Life Expectancy
The individual’s life expectancy is a key factor in determining when hospice care is needed. This is usually determined by a primary care physician, who can provide an estimate of how much time the individual has left and can prescribe the right course for pain and symptom management.
2. Physical and Emotional Health
Declines in physical and emotional health are natural nearing “the end.” In addition to their body shutting down, a loved one may feel depressed and even scared of this final stage. At this point, it’s wise to begin mobilizing hospice care resources.
3. Medical Treatment
The effectiveness of current medical treatments also must be considered when deciding the right time for hospice care. In many terminal illnesses, like cancer or congestive heart failure, treatments become no longer effective against their progression. Contact hospice if your loved one is no longer responding to medical treatment, refusing further treatment, or if all options have been exhausted.
4. Quality of Life
As we always say, “We’re all entitled to a LIFE WORTH LIVING.” That means we’re entitled to quality of life, and if our loved one is experiencing a great deal of pain, discomfort or distress, hospice care provides support and comfort – for everyone involved – at all levels..
5. Financial Considerations
Finally, financial considerations should also be taken into account when deciding on hospice care. Hospice is often covered by Medicare, Medicaid and/or private insurance. It’s important to research the options and make sure the individual’s financial needs are being met. If you’re unsure about your family’s ability to pay, Medicaid and VA eligibility planning (with asset protection) is the best place to start.
Hospice Care: Let’s Plan Dignified & Compassionate End-of-Life Resources
Preparing for and entering hospice 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.