When Is Hospice the Right Choice With Lung Cancer?

Hospice is usually recommended when the risks and side effects of further treatments will outweigh the benefits. The word hospice is sometimes equated with giving up, though it is far from that., The balance between the risks and benefits of treatment is something that each person needs to weigh for themselves, and the answer may vary widely between different people. There is no right and wrong on this spectrum; only a decision that is best for you and your family.

What Is Hospice?

Hospice is not a place. It is a type of holistic care that generally takes place in the patient's home. Nurses, doctors, social workers, chaplains, art therapists, and bereavement specialists can all be involved in this type of care, and often visit the patient's home at different times.

The goal of hospice is to secure comfort, as well as emotional and spiritual wellbeing for the patient and their caregivers while they confront an incurable illness.

Not all hospice care is the same, and there are actually four different levels of hospice care based on a Medicare definition.

The levels of care include:

• Level 1 -routine health care at home: This care provides basic services from nursing care to emotional support.
• Level 2 -continuous care at home: Continuous home care is usually a short-term option that's needed for managing severe pain or shortness of breath. Care is re-evaluated each day and a nurse or home health aid is present from 8 to 24 hours a day.
• Level 3 -general inpatient care: This service is similar to continuous home care and is for people who prefer care in an inpatient facility.
• Level 4 -respite care: Respite care is a temporary inpatient option for those receiving level 1 hospice care when caregiver stress is causing difficulties and the family needs a short break. There is usually a five-day limit on this care.

It's Important to Talk About Hospice When You Are Feeling Well

Many people choose hospice only at the very end of their life—the last days and maybe weeks—missing many of the potential benefits of this program. For example, among people with lung cancer, we know that hospice is underutilized.

Sometimes healthcare providers don't bring up hospice care soon enough. You and your family may need to initiate a discussion with your healthcare provider, preferably before the need arises.

In addition to having the opportunity to benefit from the spectrum of hospice services, a 2017 study found that an early discussion of hospice with people with lung cancer resulted in less futile aggressive treatment at the end of life. This was important because, for the patients in the study, there was no difference in survival rate between those who had aggressive treatment at the end of life and those who did not.

In another study, family members of people with lung cancer who had early hospice enrollment had a better perception of the end of life care for their loved ones than those who did not.

Questions to Ask Before Choosing Hospice

The decision to choose hospice can be overwhelming and some questions can help guide you:

• Are there any remaining treatment options for your cancer?
• What is your quality of life like today?
• What would you wish your quality of life to be?
• Would any further treatments reduce your quality of life further?
• Have you had a palliative care consult?
• How does your family feel about your decision?
• Is hospice care covered by your medical insurance or hospice Medicare benefit?

What Services Are Offered by Hospice?

It’s easiest to understand the services offered by hospice if you understand that hospice is designed to care for a person physically, emotionally, and spiritually—and not just the person who is dying, but the entire family.

Some of the services provided by hospice include:

• Spiritual care: Your hospice care team includes clergy who can help you with the difficult questions faced at the end of life. This care is designed for your specific needs and does not promote or exclude one religious practice over another.
• 24/7 access: You will be able to contact your hospice care team at any time of day or night with any questions or concerns you have.
• Family support: The hospice team is family-centered, and in addition to helping your family understand what you are facing medically, support is provided for their questions and emotional struggles. Family meetings may also be held so that family members can share what they are feeling, and talk about their fears and concerns.
• Bereavement care: For a period of a full year after death, hospice provides services to surviving family members. This can include counseling or clergy in person or by phone.

Can You Still Receive Treatment While Under Hospice Care?

Many people worry that choosing hospice stops treatment completely. This is not true. In choosing hospice you make a decision against pursuing active treatment of your lung cancer, but you can still have treatments for relief of your symptoms and to improve your quality of life.

Different hospice providers have different guidelines about what constitutes active treatment.

For example, some hospice programs may or may not consider these to be hospice care:

• The use of a feeding tube
• Management of malignant pleural effusion (fluid build-up around the lungs containing cancer cells)
• Installing a shunt
• Palliative measures that improve shortness of breath
• Treating a bone fracture
• Radiation therapy to reduce pain
• Intravenous fluids to manage dehydration

In general, any treatment that has a main focus on improving your quality of life should be sustained while under hospice care.

Newer Treatment Options to Consider Before Choosing Hospice

In the past, there were few options for treating cancer. This has changed considerably with treatment options such as targeted therapies and immunotherapy.

For example, it's important that everyone with non-small cell lung cancer have molecular profiling (gene testing) done on their tumor, If a targetable mutation such as an EGFR mutation, ALK rearrangement, or ROS1 gene rearrangement is found, these could be amenable to targeted therapies, which can delay the progression of cancer or put you in remission, with generally fewer side effects than conventional chemotherapy.

Immunotherapy can be another option for some types of advanced lung cancer. These treatments are more likely to be effective if you have PD-L1 testing that reveals high levels. Immunotherapy drugs do not work for everyone, but for some people, they can result in a durable response (long-standing control of cancer).

How to Find the Best Hospice Care

The availability of hospice care varies depending on where you live, and it is often more accessible if you live in an urban rather than rural region. The first decision is to decide if you wish to have it at home or if you wish to be in a care facility. There is no right choice, and the best decision is what you and your family feel are right for you.

Many communities have more than one hospice provider, so you will need to choose which one best meets your need. Your oncologist and oncology nurse can help. If you are involved in a local lung cancer support group or community, you can ask for recommendations from your support community as well. There are also state and national organizations, such as your state's hospice organization, that you can contact with questions.

A Word From Verywell

No two people or two cancers are alike, and nobody can make the important decision about hospice for you. It's important to understand all of your options and to make a choice that honors your own needs and those of your family. That said, several studies have found that families of people who have lung cancer believe their loved one's quality of life was much better when hospice care was chosen earlier, rather than later.