How To Start The Conversation About Hospice Care
Hospice care improves the quality of life for patients, families, and caregivers. However, individuals often wait too long to have the conversation, reducing their chances of having full access to hospice’s full-spectrum support services. Studies show that the sooner qualifying patients receive hospice care, the longer they live, and the richer their lives become.
It’s Never Too Early To Talk About Hospice Care
Conversations around hospice care would ideally take place long before anyone has a terminal diagnosis or prognosis. They should be part of any individual’s end-of-life care plans, so they can be implemented when the time is right. Of course, that’s not how it typically takes place. Unfortunately, most patients and their families resist talking about hospice until the patient’s death is more imminent. As the Hospice Foundation of America puts it, “A person does not have to be bedridden or in their final days of life to receive hospice care. It is most beneficial when the patient and family can receive care early to take advantage of the many benefits hospice care offers. It can be used for months, as long as medical eligibility is met.”The Best Time To Have A Conversation About Hospice Care
Here are some of the best times to start the conversation around hospice care.While making your end-of-life or estate plans
If you are in the process of making end-of-life or estate plans, you are at the perfect point to talk about, if and when, you’d want to enlist the support of hospice care. We recently posted an article reviewing important questions to ask as you review your end-of-life plans. We recommend discussing plans with your partners, a close friend, your children or heirs, and anyone else who has a vested interest in your wellbeing. The more you and others are made aware of your wishes, the easier it is to follow through when the time comes, and that includes initiating contacts with local hospice or palliative care agencies.When you receive a terminal diagnosis or prognosis
Have you or a loved one received a terminal diagnosis or prognosis? Depending on your age and general wellbeing, odds are your first course of action is to pursue curative treatments. This is also a good time to learn more about hospice care versus palliative care and to discuss what you learn with your doctor. Physicians are gifted at healing the physical body and are well-versed in the most recent treatment options and cures, but they aren’t always as good at honestly letting patients assess the quality of life in their pursuit of “more time.” The more your doctor can be honest with you about the true risks/benefits/expectations associated with potential treatment options, the more truthful they can be when/if they feel it’s time to accept the inevitable – planning for comfort care and quality of your remaining life.You recognize the signs it’s time for hospice
If a patient is resistant to pursuing hospice, there typically comes a point where it’s impossible for a spouse, caregiver, or family members to ignore the signs it’s time for hospice. These include things like:- A prognosis of 12 months or less (and more crucially if the prognosis is 6 months or less)
- You’re consumed by fears of a painful or uncomfortable death
- You’re considering palliative care
- You feel perpetually uncomfortable, weary, or overwhelmed
- You or family members are suffering from anticipatory grief (the grief of the life you’re losing or will be lost)
- You can no longer complete daily functions without support
- You know you want to die at home or somewhere other than a hospital
- The decision to cease curative care and pursue the most comfortable and peaceful death possible
A conversation about hospice care is needed when you want to know about services and support available
Hospice care agencies are always happy to share what they do with prospective clients and community members. Unfortunately, we’ve developed a stigma that “hospice = death,” and it’s just not true. Yes, hospice care is specifically designed to serve individuals with a prognosis of six months or less. However, we do that by making their lives as rich, full, independent, and stress-free as possible. Some of the most common services available through hospice agencies include:- 24/7 support from qualified hospice nurses and personnel to answer questions and address immediate concerns
- Peace of mind because of hospice’s support of pain management, symptom management, and life-enriching resources
- End-of-life care and bereavement planning
- Home visits from hospice physicians, nurses, and aides
- Delivery of durable medical equipment to make life easier (adjustable beds, bedside commodes, oxygen, shower chairs, etc.)
- Prescription refill/delivery
- Support with bathing, dressing, linen changes, and other hygiene tasks
- Access to support from hospice social workers, spiritual advisors, and therapists
- Grief support
- Help from hospice volunteers (including respite care for primary caregivers, meal/grocery shopping, companionship, dog walking, musicians, pet therapy, and more)
Tips For Talking To A Loved One About Hospice
Are you having a hard time broaching the subject? We understand. Some of our most tried and true tips include:- Being patient and compassionate. It will probably take more than a single conversation, especially if your loved one is reluctant to discuss death or the need for extra support. Your patience and compassion are invaluable when it comes to helping them meet you halfway, rather than retreating out of fear.
- Let them know you need help and support. If they can’t do it for themselves, see if they’ll do it for you. Hospice isn’t just for the patient – it’s for the patient’s family/caregiver network as well. Tell them you need the support services offered by hospice, even if your loved one never participates. That’s a great way to get hospice in the door and typically patients follow suit, even if they don’t, you’ll have access to essential emotional and practical care support.
- Dispel common myths about hospice. Again, most people associate hospice with death rather than the life-supportive services we offer. Do your best to dispel common myths about hospice to help your loved one see the potential benefits.
- Explore options together. Or, in some cases, ask if there’s someone else they’d rather explore their options with. Sometimes, patients feel more comfortable looking into options alone or with a trusted friend or neutral colleague rather than with a spouse or close family members.
- Respect their feelings/decisions. Unless you feel dementia or Alzheimer’s are at play, always respect their feelings and decisions. Everyone deserves to make their own medical and end-of-life choices and your ability to respect their feelings in the present, even if you disagree, may open the space required for them to explore hospice options again in the near future.