Neil Rubino
Jennifer Clark, MD, HMDC, CAQ-Geriatrics, Hospice and Palliative Care Physician, Hospice of the Chesapeake
By Jennifer Clark, MD, HMDC, CAQ-Geriatrics, Hospice and Palliative Care Physician, Hospice of the Chesapeake
When someone is diagnosed with a serious health condition, their journey through illness often unfolds in stages. For many, the path begins with managing a progressive illness such as dementia, heart failure, emphysema or cancer that worsens over time. Eventually, some patients transition to end-of-life care, when curative treatments are no longer effective and the focus turns fully to comfort.
While these two phases overlap, they are not the same. Understanding the difference can help families make informed choices and access the right support at the right time.
What is progressive illness care?
Healthcare for progressive illness is palliative care. The goal is to improve quality of life by managing symptoms, supporting emotional well-being and preparing for future decisions.
Progressive illness care means a nurse practitioner or physician works alongside the patient’s primary care doctor and specialists. We help manage symptoms, complete advance directives and support family dynamics. We also bring in a social worker and chaplain if needed. We are there to help patients manage symptoms such as pain, anxiety, nausea, insomnia, depression. Visits may occur monthly, every three months or every six months. It all depends on what the patient needs and wants.
Palliative care visits can take place where the patient lives or in a clinical setting. The emphasis is on helping patients live as well as possible for as long as possible, while planning ahead for the “what ifs.”
When does care shift to end-of-life?
End-of-life care, also known as hospice care, begins when a patient has a limited life expectancy, typically six months or less if the illness follows its natural course. At this stage, care becomes more intensive and comprehensive.
Hospice provides a team approach, with physicians, nurse practitioners, nurses, certified nursing assistants, social workers, and chaplains. Support is available 24/7, reducing unnecessary hospital visits and ensuring comfort at home. Instead of calling 911 and ending up in the ER over and over, families can call the hospice team directly and receive the support they need.
Common signs that a patient may be transitioning from progressive illness to end-of-life include:
- Significant weight loss
- Increasing weakness or fatigue
- Needing to stay in bed most of the day
- Difficulty managing pain or breathing
- Curative treatments no longer working
These are difficult conversations. But the sooner families understand what’s happening, the sooner they can get the support they need.
Shifting goals of care
As illness advances, the goals of care shift. In the earlier stages, treatment may focus on managing symptoms and preserving independence. Over time, priorities often move toward maximizing comfort, supporting emotional and spiritual needs, and ensuring that care aligns with the patient’s values.
It is important to make known your wishes about hospitalization, life support or remaining at home long before a crisis occurs. Everyone should be doing advance care planning. It’s about settling on values and helping people avoid struggling alone.
Misconceptions about hospice and palliative care
One of the most persistent myths is the belief that medications like morphine hasten death. That is absolutely not the case. In fact, unmanaged pain, breathlessness or agitation can actually shorten life. Research shows that when symptoms are controlled, patients often live longer.
Another misconception is that hospice means “giving up.” Instead, it is a shift in focus from curing disease to living well with the time that remains, surrounded by compassionate support.
Advice for families: Ask now
If it ever feels right, you might consider asking about palliative or hospice care. Exploring it earlier can sometimes bring comfort and support for both you and your loved ones. It’s always your choice, and no one will push you into it before you’re ready.
See hospice as a resource not only for patients, but for loved ones. Besides medical support, hospice services provide respite, counseling and spiritual care that ease the burden on spouses, children, and caregivers.
Having a good day
Whether it’s progressive illness and end-of-life, the heart of supportive and hospice care is helping people have good days. That means focusing on both the physical and emotional. If you’re not anxious, not depressed, not in pain, not short of breath, not constipated and you can sleep—that’s a good day. The goal is to help patients and families holistically.
Ultimately, the distinction between treating progressive illness and providing end-of-life care is less about drawing a line and more about meeting people where they are. Both approaches aim to bring relief, dignity and compassion to some of life’s hardest moments.
