When Should Someone Be Offered Palliative Care?

When an elderly loved one has been diagnosed with a terminal or long-lasting illness, their overall care needs change. They need a different level of care than they would normally need for aging or for a curable or short-term illness. Such a diagnosis often brings up the question of when should someone be offered palliative care, especially if traditional care is not as effective as you hoped it would be. But, asking when should someone be offered palliative care is not necessarily the right question, as you’ll soon see. The better question may be: How soon can we start palliative care?

What is palliative care?

There is some confusion about what palliative care is and when should someone be offered palliative care. Some people confuse this type of care with hospice, but they are not the same thing. If you’re asking when should someone be offered palliative care, you need to be familiar with the differences between hospice and palliative care and know that hospice is a type of palliative care.

Hospice care is when a person who has been diagnosed with a terminal illness has been deemed a candidate or has elected to discontinue life-prolonging treatment and allow the disease to take its natural course. The focus is on making the patient as comfortable as possible while also preparing them for the end of their life.

Palliative care, on the other hand, does not necessarily involve the discontinuation of life-prolonging treatment. The focus instead is on relieving pain and meeting the patient’s emotional, practical, and spiritual needs to improve the quality of their life, however they define that. Palliative caregivers work to identify a patient’s needs around symptom relief, spiritual or therapeutic counseling, community services, and personal care assistance.

Patients do not need to discontinue any type of treatment for their illness when receiving palliative care. They can keep pursuing a cure and continue to see their current physicians throughout the entire process. The only difference between regular treatment for a life-threatening illness and palliative care is that palliative care focuses on the patient as a person and their individual needs.

Receiving palliative care does not necessarily mean the patient is dying. While it is true that when deciding when should someone be offered palliative care, there is usually a life-threatening or terminal diseases involved, some patients receive palliative care until they’re improved enough to move out of it. They can always move back into palliative care if they need to.

Palliative care can include hospice care, particularly for elderly patients who are not candidates for specific treatments. For example, many elderly people are too weak to undergo surgical interventions and will ultimately allow the disease to take its natural course. 

Conditions for which palliative care is appropriate

When determining when someone should be offered palliative care, the first step is to assess their physical condition and diagnosis. If they have been diagnosed with a life-limiting condition or a chronic illness, they can probably benefit from palliative care. This is particularly true if the patient is receiving intensive treatment to either manage their condition or relieve their pain.

Conditions for which palliative care is appropriate are those that aren’t immediately life-threatening, but will require a high level of management to control pain and other symptoms that lower a patient’s quality of life. When you’re first diagnosed and are wondering when someone should be offered palliative care, ask your physician: (1) what the prognosis is, (2) what the expected symptoms are, and (3) what types of treatment are available. The answers to these questions will help you decide whether or not palliative care is the right course of action for you.

You don’t have to choose palliative care immediately upon diagnosis, although there are many benefits to getting the process underway as soon as possible. Since this type of care is not dependent upon the discontinuation of life-prolonging treatment, you’ll receive the spiritual, emotional, and physical care you need to make sure your quality of life is as high as possible for as long as possible.

Medical conditions for which palliative care is often prescribed are the moderate or advanced forms of:

• Cancer
• Dementia
• Neurological diseases (ALS, multiple sclerosis, Parkinson’s, etc.)
• Heart disease
• Pulmonary disease
• Liver disease
• Renal failure
• AIDS
• Other terminal illnesses

Signs you might be ready for palliative care

Even though anyone who has been diagnosed with a chronic or life-limiting condition can receive palliative care, there are some signs that may dictate who should be offered palliative care. These signs include the following:

1. The patient is spending more time in bed or confined to a chair and their time is spent mostly sleeping
2. The patient is experiencing more frequent falls
3. The patient is experiencing unexplained weight loss
4. The patient is experiencing shortness of breath
5. The patient needs to increase the amount of medication they are taking to control pain or symptoms
6. The patient is experiencing an increased number of emergency room visits and/or hospitalizations
7. The patient is experiencing difficulty with daily living tasks like bathing, toileting, dressing, preparing meals, getting out of bed, and walking.
8. Recurrent or frequent infections

If you notice any of these signs in yourself or a loved one, you should seek the opinion of your or your loved one’s physician to determine whether palliative care is the right option. Palliative care is just like any other medical speciality and will require a referral, but unlike hospice care specifically, a referral for palliative care is easier to obtain since the benchmark for receiving palliative care is much lower.

Who is involved with palliative care?

If you’re considering when someone should be offered palliative care, you should also know who will be involved in your or your loved one’s care when they receive it. Palliative care is essentially a team-based approach toward improving a critically or chronically ill patient’s quality of life. 

Therefore, several individuals will be involved with you or your loved one’s care, including doctors, nurses, psychologists, social workers, and religious leaders. Each individual will be responsible for addressing at depth the physical, emotional, and spiritual suffering that is being caused by the illness. They will also all be involved with determining when someone should be offered palliative care and how long they need it for.

Additionally, the patient and the patient’s family will be intimately involved with their care and treatment plans. For example, if the patient doesn’t want a religious advisor and would rather seek spiritual healing through nature, the care team can make that happen. And if the patient is unable to communicate that need, the patient’s family can ensure their wishes are carried out.

The roles of each individual involved in the palliative care process are listed below.

• Medical Director – Certifies the patient’s need for palliative care and assists in the development of a care plan and is involved in an interdisciplinary team of physicians who assess the patient’s care needs.
• Attending physician – Leads the patient’s medical care and is involved in an interdisciplinary team of specialists who are each responsible for the patient’s medical needs within their discipline.
• Registered nurse – Addresses the patient’s symptom management and comfort care requirements. Also coordinates patient/family services and instructs family members on patient’s care issues.
• Supportive therapists – Provides the patient with nutritional counseling, wound care, mental health care, and other therapies as determined by the care team. May include psychologists, nutritionists, occupational therapists, physical therapists, and others.
• Social worker – Assists the patient and their family with developing coping strategies, finding and accessing community services, and receiving counseling in various areas including financial, relationships, and end-of-life decisions.
• Spiritual advisor – Provides spiritual support that’s consistent with the patient’s beliefs and grief and bereavement services.
• Healthcare/personal aide – Assists the patient with personal care activities like light housekeeping, bathing, feeding, and other similar chores as determined by the care team.
• Volunteer – Provides practical support to the patient and family as needed.

Tips for getting palliative care

As mentioned briefly above, palliative care is usually easier to get than hospice care because the threshold for qualification is lower for palliative care. Since you don’t have to withdraw life-prolonging treatment to get palliative care, doctors are less hesitant to prescribe it. If you’re asking when should someone be offered palliative care, in most cases, all you need to do is talk to your doctor about getting palliative care and they will take it from there. But, there are some tips about how to talk to your doctor and what specifically to talk about.

• Let your doctor know that you’re thinking of palliative care and ask them where palliative care is available.
• Ask your doctor to fully explain your condition and the available treatments and procedures that you can expect to receive in the future.
• Tell your doctor what the term “quality of life” means to you. It might be that you want to spend more time with your family or that you want to be free of pain, or that you just want to be in control of how and where you’re treated.
• Make your doctor aware of any religious, cultural, spiritual, or personal beliefs, practices, or values that should be taken into consideration when developing a palliative care plan.
• Advise your doctor of any treatments you want or don’t want.
• Let your doctor know that you want to schedule time to discuss your future treatment plan, even if you are early in your illness.
• Provide your doctor with a copy of your living will or health care proxy. If you don’t have these, ask your doctor how to go about establishing them.
• If at any point during your illness you’re experiencing pain, other symptoms, or stress related to your condition, let your doctor know that you’d like to include management of those issues in your palliative care plan.

Where palliative care is delivered

By design, palliative care is flexible so that the individual needs of the patient are assessed and addressed in a way that improves their quality of life. For this reason, palliative care can be delivered almost anywhere the patient is. It can be provided in hospitals, nursing homes, assisted living communities, outpatient palliative care clinics, other specialized clinics, and even at home. At the same time that you’re asking when someone should be offered palliative care, you should also be asking where they should receive it.

As the patient, you have a large say in where you receive palliative care, especially since this form of care is so patient-centered. Part of your quality of life is where you spend it, so be sure to carefully consider what environment makes your life better as you go through the treatment for your illness. Your family can help you make these decisions as well.

Palliative care is patient care

Ultimately, when thinking about when should someone be offered palliative care, the answer is, it depends. It depends on your personal treatment goals, your symptoms, your definition of quality of life, your care needs, and your prognosis. It also depends on where you are in your disease progression and what you hope to achieve by implementing palliative care.

The best way to determine if you or your loved one is ready for palliative care is to talk to you or your loved one’s physicians. Together, you can decide if palliative care is the right path for you at this point in your life.

Sources:

1. Understanding Palliative Care: It’s Not What You Think, Lung.org, www.lung.org
2. Effective Palliative Care: What Is Involved?, National Library of Medicine, pubmed.ncbi.nlm.nih.gov
3. How to Get Palliative Care?, getpalliativecare.org