Understanding How Hospice and Death Doulas Work Together

Death doulas and hospice teams complement each other in providing holistic end-of-life care. While hospice focuses on medical and palliative support, death doulas address the emotional, spiritual, and practical aspects of the dying process. 

Death doulas often work alongside hospice staff, ensuring seamless communication and care for the patient and their loved ones. They may provide companionship, guide families in creating meaningful rituals, assist with legacy projects, or offer emotional support during difficult transitions. By bridging gaps in care, death doulas enhance the hospice experience, fostering a sense of peace and empowerment during this profound stage of life. Together, they create a compassionate environment that honors both the medical and personal needs of the dying.

When guiding a family facing end-of-life decisions, it's essential to acknowledge that selecting a hospice provider is a deeply personal choice. Each hospice company is unique, and families should seek a team of professionals who genuinely care about end-of-life support and can meet their specific needs. Here are key questions and considerations to assist families as they navigate this decision:

1. Does all treatment stop with hospice?

Hospice care means ceasing curative treatment for life-limiting illnesses (e.g., cancer, heart failure). However, it does not mean stopping all care. Treatments for wounds, infections, or comfort measures such as oxygen and pain and/or anxiety management can continue based on individual needs and preferences. A quality hospice team will create a personalized care plan.

2. Do regular medications (e.g., for blood pressure or heart conditions) need to stop?

In most cases, regular medications continue. However, if taking them becomes challenging or they cause significant side effects, adjustments may be made. This decision is made collaboratively between the patient and the hospice team.

3. Can we leave hospice care if we change our minds?

Yes. Hospice care is entirely voluntary. If you decide to pursue curative treatments again, you can discontinue hospice and return if needed later. Re-qualifying may involve steps based on your insurance provider.

4. Can my loved one keep their primary care doctor (PCP)?

Yes, families can keep their PCP or work with the hospice’s medical director, whose services are included at no extra cost.

5. What if the doctor suggests continuing treatment, but my loved one wants to stop?

Communication is key. Families should discuss goals of care and prognosis with the doctor, emphasizing the patient’s wishes. A good hospice team can support these conversations.

6. How long can someone be on hospice?

Eligibility is based on a physician’s assessment of the patient’s condition. As long as the criteria are met, hospice care can continue. If the condition improves, hospice care may no longer be needed.

7. How long will my loved one live?

This is unpredictable and depends on the individual’s condition. Hospice teams focus on managing symptoms and maximizing quality of life, not setting time limits.

8. What if my loved one improves?

If a patient’s condition improves and hospice care is no longer needed, services can be discontinued. Patients can re-enter hospice care if their condition later declines.

9. I can’t provide full-time care. What are my options?

Hospice social workers can help families explore respite care, 24-hour facilities, or in-home caregiver options. Volunteers and hospice staff can also provide caregiver relief.

10. How can I make my loved one comfortable?

Think about their habits and preferences. Small things, like a favorite pillow or music, can make a difference. Hospice staff can guide physical care, but families bring valuable personal insights.

11. If at a facility or hospital, will the chaplain push religious beliefs on us?

No. Chaplains follow the family’s lead regarding spiritual needs and provide support without imposing specific beliefs.

12. Can alternative medicines continue?

Yes, but the hospice physician must be informed of any supplements to avoid interactions with prescribed medications.

13. Do pain medications like morphine shorten life?

No. Pain medications are carefully dosed to manage symptoms and improve quality of life. They do not hasten death when used appropriately.

14. Will my loved one become addicted to pain medications?

Tolerance may develop, requiring adjustments to maintain effectiveness. Addiction is not typically a concern in end-of-life care.

15. Is it harmful for children to be around someone who is dying?

Children can benefit from being part of this process if guided appropriately. Hospice teams can provide resources to help parents address the situation in age-appropriate ways.

16. How should I respond to a loved one with dementia who is confused?

If your loved one talks about or sees things that aren’t there, it’s often best to avoid correcting them. Engage with their reality, as it may provide comfort or reveal cherished memories.

17. I feel overwhelmed. How do I cope?

Respite care is available to give caregivers a break. Hospice teams can provide emotional support and help coordinate caregiving resources as well as refer to caregiver resources. 

18. What are signs that death is near?

Signs include reduced responsiveness, slower breathing, and decreased circulation. The hospice team will guide you through these changes and address your concerns.

19. Should we talk about death with our loved one?

Yes, if they’re open to it. Discussing death can provide comfort and closure. A hospice team can help facilitate these conversations.

20. Can we go to the hospital if needed?

Yes, but the hospice team aims to manage symptoms at home. They are available 24/7 to provide care and guidance.

21. How do we ensure the living will is followed?

Keep a copy of the notarized living will and share it with the hospice team so it can guide the care plan.

22. Who handles finances if my loved one can’t?

If a power of attorney hasn’t been established, hospice social workers can guide families through the process.

23. How do I handle my emotions around my loved one?

It’s okay to share your feelings. Hospice staff can provide support and resources to help you navigate your grief.

24. Will my loved one starve if they stop eating?

No. Loss of appetite is a natural part of the dying process, and it does not mean they feel hungry.

25. How can I tell if my loved one is in pain?

Hospice nurses are trained to recognize nonverbal signs of pain and adjust treatment plans accordingly.

26. Can my loved one hear us if they’re unresponsive?

Likely, yes. Many patients find comfort in hearing familiar voices and feeling a loved one’s presence.

27. What happens when we contact a hospice company?

Hospice representatives assess needs, determine eligibility, and quickly set up services, including necessary equipment and medications.

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Hospice care provides compassionate support for patients and families during a profoundly challenging time. Families are encouraged to ask questions and work closely with the hospice team to create a plan that reflects their unique needs and values.