The moment you’re diagnosed with a serious illness is often the moment you and your family begin asking some serious questions. As your illness progresses, those questions often progress too.
How can you live fully within the new realities of advanced illness? What plans do you need in place for the future? Who can your family lean on for help?
That’s where HopeHealth’s Advanced Illness Care comes in. The home-based program, part of HopeHealth palliative care, is devoted to patients in the later stages of illness.
Like all palliative care, the Advanced Illness Care program is available even as you pursue curative or life-prolonging treatments.
Unlike most palliative programs, though, it works with you right in your home. The team meets with you wherever you reside, helping to prevent and treat the symptoms and stress of your illness.
And along the way, they answer these questions.
1. What’s the best way to control my symptoms?
When you have a serious illness, especially in an advanced stage, quality of life often hinges on keeping your symptoms under control. From lunch with a friend to attending your grandchild’s school play, it’s hard to join in certain activities if you’re suffering with pain, breathlessness or other symptoms.
The Advanced Illness Care team specializes in the complicated symptoms that are common in the later stages of illness, and offers an extra level of expertise, medication and holistic techniques to keep you feeling your best.
Because the team works with patients in their own home, they also gain rare insights into how a patient feels in their day-to-day life — insights that are hard to come by in a hospital setting.
“It’s really a privilege to be able to see patients in their home,” says nurse practitioner manager Kaitlin Collins, NP, ACHPN, who oversees the Advanced Illness Care program.
> Related: 7 common myths about palliative care
2. How do I manage the stress of my illness?
How you’re feeling physically is only one piece of how you’re doing. The stress of an advanced illness impacts your emotional and social well-being too.
The Advanced Illness Care team, which includes a social work expert, helps patients and families find coping strategies for the challenges of their diagnosis. “We take care of the whole patient, and their family,” says Maria Appenfeller, RN, the program’s transition of care manager.
Patients and caregivers can also join free virtual support groups. These groups offer a safe space, an understanding community, and additional resources.
3. How do I find answers to all my “what if?” questions?
Palliative care teams have a great deal of expertise in the later stages of serious illnesses, including what your diagnosis could mean in concrete terms for your life today and tomorrow.
For any patient, this ready source of knowledge can be a huge relief. And for patients with advanced illness, it can be particularly helpful to have these conversations at home, a setting where it’s often easier to dig deep into sensitive questions.
“We can be a resource about what tests results might be like, what future disease progression might look like, and help you understand how that might impact your life. We can even help you form the questions to ask you when you go to your provider’s office,” says Maria. “The more information that patients and families have, they more they feel in control of what’s happening.”
4. What do I actually want for my medical care going forward?
Once you understand the treatment options available to you in the advanced stages of your illness, you may want support deciding which you do and do not want.
The official term for this is “goals of care,” and it’s a hallmark of palliative care. Along with helping patients understand what different care plans could mean for their lifestyle, the Advanced Illness Care team also devotes time to simply talking through what quality of life means to them, so they can make decisions that reinforce it.
Because the team meets with each patient where they live, they have that added context of home — family members and pets nearby, pictures on the walls, collections and trophies — to reflect their unique values and life.
“Patients want to understand their illness and their prognosis. And they want to be understood — to really get at what’s important to them, with this illness that has changed their life,” says Kaitlin. “We give them the time to be understood.”
5. How can I help my family understand and accept my plans?
Once you’re clear on your goals of care, it’s important that your family understands them too.
But these conversations can be difficult at any stage of a serious illness, and especially in its late stages — for example, if you’ve decided that you will not pursue aggressive treatment options at a certain point, and instead wish to shift to hospice care at that time.
Palliative experts like the Advanced Illness Care team are trained to help.
“We can coordinate family meetings and facilitate these conversations in the comfort of your own home. We’re there to provide clinical information, and take some burden off you or your healthcare proxy,” says Kaitlin.
6. How can I make sure all my doctors are on the same page?
Along with your family, your health teams need to be in the loop too. Patients in the later stages of serious illness often have a far-flung team, from primary care providers to specialists like cardiologists and neurologists.
The Advanced Illness Care team works closely with all of these health experts, to make sure everyone is aligned on a patient’s goals of care. The team also collaborates with any other services that a patient receives in the home, like skilled home care or private duty services.
“Our healthcare system can be so scattered. We put it together for patients. We’re really good at overseeing the big picture and coordinating care,” says Kaitlin.
7. Can someone lighten the load for my caregiver?
Caregivers face their own set of stressors and challenges, which can often increase in the advanced stages of their loved one’s illness.
The Advanced Illness Care team checks in on caregivers’ emotional wellbeing, finds answers to their questions, and recommends resources. For example, the team introduced one couple to a dementia assistance program in Massachusetts. It included a free adult day care program, which gave the caregiver a crucial break from 24/7 caregiving.
“Before, the caregiver was beyond stressed and couldn’t even find the time to pay his taxes or mow his lawn. The dementia assistance program really helped,” says Kaitlin.
8. Are there any community resources I should know about?
Maybe you’re eligible for heating assistance, or a free respite program. Maybe you need town transportation, or an expert to decode the fine print in your insurance plan. But like the dementia assistance program above, it’s hard to find these resources if you don’t know what’s out there.
The Advanced Illness Care team partners with you and your family to explain what’s available: “We have a social worker on our team who’s an expert at these resources,” says Maria.
Because when you’re living with a serious illness, especially in an advanced stage, every extra bit of support can make a big difference in your family’s quality of life.
That’s the goal of palliative care, and the Advanced Illness Care program.