by Brooker Wheeler, R.N., C.H.P.N.
Imagine you are receiving treatment for a chronic illness, and your health care provider says, “It seems to be getting tougher for you to get through your daily activities. Could we talk about palliative care?”
How would you feel? Alarmed, relieved… maybe confused?
I’m a nurse navigator, and I work with patients who are receiving skilled-nursing and therapy at home for a serious, progressive illness. It’s my job to help people understand when palliative or hospice care services could benefit them.
Many people have never heard of palliative care, while others mistake it for hospice. Palliative and hospice, along with curative care, are available at different points. It’s important to understand the differences between these three types of care.
The gold standard for quality care is a smooth, seamless transition through different types of services as your condition changes. Full-service health care agencies meet that standard.
What are the different types of care?
Curative care
The purpose of curative care is to cure a disease or promote recovery from an illness, injury or impairment.
- It can be provided in a hospital or at home.
- Services include physician and nursing care, surgery, medications and therapies.
- Two examples are chemotherapy for cancer and physical therapy after joint-replacement surgery.
Contrary to myth, starting palliative care does not mean you are going to die soon. Many people live for years while on palliative care.
Palliative Care
The purpose of palliative care is to bring comfort and relief from a serious, progressive illness that may or may not be life-limiting.
- It can be provided in long-term care facilities and hospitals and outpatientcare.
- HopeHealth Advanced Illness Care provides palliative care to patients at home in the later stages of illness.
- It is available immediately after diagnosis and can be given alongside curative care.
- Services may include medical care (physician and nursing care, medications) and non-medical care (care coordination and social work).
- A personalized care plan might include, for example, pain relief medication, care coordination services and assistance with preparation of an advance directive form.
Most families don’t choose hospice until the final days of life, which is unfortunate because the sooner you start care, the sooner you can get help to relieve your distress and discomfort.
Hospice Care
The purpose of hospice is to bring comfort and relief to people with a life-limiting illness who have decided to stop curative treatments.
- It is available only after your physician and a hospice doctor certifies that life expectancy is six months or less. (However, people who qualify for hospice can continue to receive services if they live longer than six months.)
- Services include medical care (skilled nursing and physician care, medications) and a wider variety of non-medical care (social work, spiritual services, medical equipment, alternative support, grief support).
- A personalized care plan, for instance, could include nursing care, pain relief medication, emotional counseling, a hospital bed, a home health aide and pet therapy.
When is the right time to consider palliative care?
Palliative care is a wonderful yet under-used treatment option for people whose chronic illness has progressed to the point where it affects their day-to-day life.
Contrary to myth, starting palliative care does not mean you are going to die soon. Some people live for years while on palliative care. And you do not have to stop your curative treatments—if you are fighting a stage-four cancer diagnosis, you can keep on fighting.
As an added layer of support, your palliative care plan might include symptom-management medications that are not available through traditional home care services.
Your provider can also help you understand the big picture of your health situation, identify your goals of care, and help you fill out forms that document your wishes regarding life-saving treatments like intubation or CPR. It can bring peace of mind to make your wishes known to loved ones long before a stressful or emergency situation.
Who can benefit from palliative care?
Here are some examples:
- A man in his 80s with congestive heart failure who has been hospitalized several times over the past two years
- A woman with chronic kidney disease whose doctor tells her she will need dialysis in the near future
- A cancer patient who has lost her appetite as a side effect of chemotherapy
- A woman recovering from heart surgery who has not told her family if she would like to be resuscitated to save her life again
- A man with dementia whose daughter can no longer leave him home alone safely while she runs errands
- A woman who has lived with COPD for five years and now needs her inhaler to climb stairs and do laundry
When is it appropriate to start hospice?
Choosing hospice means you wish to shift the priority from extending your life to improving the quality of life you have left. Hospice does not accelerate death, you can still see your doctors, and you can still go to the emergency room if you need it.
Like palliative care, hospice offers symptom relief and assistance with making your goals and wishes known. Unlike palliative, hospice also offers counseling, spiritual support and grief support for your family. (All hospice services are covered by Medicare and most private insurers.)
Most families don’t choose hospice until the final days of life, which is unfortunate because the sooner you start care, the sooner you can get help to relieve your distress and discomfort.
What is the highest standard of quality for these types of care?
The gold standard for quality care is a smooth, seamless transition when you add or switch services as your condition changes. Full-service health care agencies meet that standard.
Receiving care from a single agency that provides home care, palliative care and hospice means we as providers see you over time and can determine whether your needs are changing. Your medical records are already in our system, so you don’t have to tell your story multiple times. Most of all, we earn your trust.
People who are seriously ill are used to dealing with a lot of cooks in the kitchen regarding their health care, which can be overwhelming. It brings extraordinary comfort when I say to families, “I’m going to take care of this for you.”
So if your health care provider mentions palliative care or hospice, don’t be afraid. We are here to lift a weight off your shoulders.
Brooke Wheeler, R.N., C.H.P.N, is the palliative care navigator at HopeHealth, a non-profit provider of hospice, palliative care, home care, and dementia and Alzheimer’s support services, serving Massachusetts and Rhode Island.