Deciding when to transition into hospice care is an extremely difficult and emotional decision for terminally ill patients and their families. Hospice provides compassionate care for those with a life expectancy of 6 months or less by focusing on comfort and quality of life instead of aggressive treatments. Knowing the right time to choose hospice ensures patients receive the most appropriate care during their final days.
What are the requirements for hospice care?
In order to qualify for hospice care, two physicians must certify that a patient has 6 months or less to live if their disease follows its normal course. While some hospice organizations accept patients with up to a year left to live, most hospice care is tailored to the last 1-3 months of life when more intensive symptom management is often needed.
Patients do not have to be bedridden or hospitalized to start hospice care. Many continue to live at home with the support of the hospice team. Hospice is covered 100% by Medicare, Medicaid, and most private insurance plans.
Some signs that hospice may be appropriate:
- Disease progression indicates life expectancy of 6 months or less
- Increasing difficulty with activities of daily living like bathing, eating, and dressing
- Frequent hospitalizations or ER visits for complications of the illness
- Unintentional weight loss of 10% or more in the last 6 months
- Difficulty managing pain, shortness of breath, or other concerning symptoms
What are the benefits of hospice care?
Hospice provides comprehensive comfort care to allow patients to live their best quality of life in their final months, weeks, or days. The hospice team works to treat all dimensions of end-of-life suffering.
Benefits of hospice care include:
- Expert pain and symptom management – The hospice team focuses extensively on pain control and relieving distressing symptoms like shortness of breath, nausea, and anxiety.
- Emotional and spiritual support – Counseling and meaning-based therapies are available to help patients and families cope with grief and find closure.
- Comfort care – The emphasis is on comfort, dignity, and quality of life versus aggressive cures.
- Respite care – Caregivers can get reprieve through inpatient respite stays of 5-7 days per month.
- Bereavement support – Continued support for grieving families for at least a year after the loss of their loved one.
When is the optimal time to start hospice care?
Ideally, patients would enroll in hospice care when they have approximately 3-6 months left to live. This allows enough time to take full advantage of hospice services without entering too late.
Research shows patients who enroll sooner tend to rate their hospice experience more favorably. Earlier enrollment gives the hospice team time to effectively manage symptoms and establish relationships with patients and families.
Some guidelines for optimal hospice timing:
- Cancer – When curative treatment is stopped and cancer continues to progress.
- Dementia – When eating and speaking abilities are significantly impaired.
- Congestive Heart Failure – When frequent hospitalizations start occurring for worsening symptoms.
- COPD – When oxygen therapy and breathing treatments no longer provide adequate relief.
- Kidney Disease – When dialysis is stopped or its burdens outweigh its benefits.
- Neurological Diseases (ALS, Parkinson’s) – When symptoms significantly impact activities of daily living.
However, it is never “too late” to start hospice services, and studies show even patients enrolled in the last days of life benefit from the comfort-focused care.
What are the risks of waiting too long to choose hospice?
Many patients enroll in hospice very close to death or after a major health crisis because they associate it with “giving up.” However, late hospice enrollment often limits its potential benefits.
Risks of delaying hospice care include:
- Difficulty controlling pain and other concerning symptoms
- More hospitalizations and invasive procedures vs. home comfort care
- Inadequate time for patient closure and life review
- Disruption and distress during the dying process
- Insufficient caregiver support and bereavement services
Ideally, patients would have time to build relationships with the hospice team and prepare emotionally before death. Entering hospice during a medical crisis leaves little opportunity for this.
How does the hospice admission process work?
If you feel your loved one’s condition indicates they may benefit from hospice support, the first step is to speak with their primary doctor. The doctor can make a hospice referral if they determine life expectancy is 6 months or less.
Some key steps in the hospice admission process:
- The hospice agency will set up an evaluation visit in your home with a hospice nurse and social worker. They will assess your needs, explain services, and start the admission process.
- The nurse and social worker gather medical records, test results, medication lists to determine hospice eligibility.
- Two physicians (often the primary doctor and hospice medical director) must certify the life-limiting prognosis.
- You discuss your goals for care and sign consent forms to start services.
- The full hospice team (nurses, aides, social workers, chaplains, volunteers) will support your care plan.
The hospice evaluation and admission process is covered 100% by insurance with no out-of-pocket costs. Most hospice organizations can start services within 48 hours of being contacted.
How can you support a terminally ill loved one’s transition to hospice?
As families face the challenges of serious illness, they can provide meaningful support to their loved one before and after hospice enrollment. Some tips:
- Listen – Provide an open, non-judgmental presence. Allow your loved one to express their full range of emotions.
- Offer reassurance – Gently reassure them you will honor their care wishes and be by their side.
- Reminisce – Reflect on your relationship, special memories, and your loved one’s legacy.
- Provide comfort – Use gentle touch, music, poetry, spiritual rituals, or other sources of comfort.
- Prioritize quality time – Spend meaningful time together free of distractions like TV and technology.
- Learn about hospice benefits – Understanding services can ease anxiety about the transition.
- Work with the hospice team – Collaborate with hospice nurses, social workers, and chaplains for support.
What should you do if your loved one refuses hospice?
Some terminally ill patients strongly resist choosing hospice due to misconceptions or fear they are “giving up.” If your loved one declines hospice care, some tips include:
- Remain patient and avoid trying to convince or pressure them.
- Request informational brochures and videos about hospice for them to review.
- Suggest a trial period of hospice care for symptom management, while treatment continues.
- Connect them with a hospice nurse or social worker to discuss concerns.
- Share positive stories of others’ hospice experiences.
- Explain hospice does not mean giving up all treatments, just curative attempts.
- Emphasize hospice focuses on helping them live life fully and comfortably.
With patience and education, many initially reluctant patients ultimately do transition to hospice care successfully.
Frequently Asked Questions
Can I be discharged from hospice if I live longer than 6 months?
Yes, if patients live longer than expected, they can be discharged from hospice care. They can be re-enrolled later when the disease progresses further.
Does hospice provide medical equipment like hospital beds?
Yes, hospice supplies any medical equipment like beds, oxygen, or wheelchairs necessary to make patients comfortable at home.
Can I still go to medical appointments and receive treatments in hospice?
Yes, hospice can coordinate with your regular medical care and some treatments may continue if they are for comfort versus life prolongation.
Will my symptoms be difficult to control if I wait too long for hospice?
Possibly. Hospices have the most success managing symptoms when there is enough time to fully evaluate the patient and fine-tune medication regimens.
What symptoms can hospice help manage?
Hospice provides medications and therapies to manage pain, breathing issues, nausea, anxiety, agitation, bedsores, and many other concerns during the end of life process.
How quickly can hospice begin care once requested?
Most hospices can start delivering services within 24-48 hours of being contacted. Rapid response teams are available for more urgent symptom needs.
Conclusion
Choosing hospice care is a difficult decision, but the compassionate support services can greatly improve quality of life for dying patients and their families. While there is no definitive formula for when to choose hospice, focusing on your loved one’s comfort, wishes, and symptom burden can help guide the timing. Open communication with healthcare providers is key in determining when hospice support might become beneficial. With careful consideration of a patient’s prognosis and priorities, hospice can provide a peaceful end-of-life experience.
