Hospice Doesn’t Take a Vacation
– but Hospice Patients Can

Did you know hospice patients can travel? 

Many imagine the last few months mean the patient is strictly homebound and bedridden with round-the-clock care, but undergoing hospice care shouldn’t limit your ability to travel, especially to fulfill last wishes or attend a celebration. Hospice doesn’t take a vacation, and in fulfilling its mission to provide quality of life for patients with a terminal illness, it can––and will––travel with you.

In fact, Medicare hospice coverage* includes provisions for temporary short-term arrangements and transfer of hospice services while traveling. This opens the door for patients to enjoy a memorable vacation with loved ones, travel for a special occasion, or fulfill a final wish.

“One job of hospice is to define the goals and end-of-life wishes for the patients,” said Shari Christian, Vice President of Clinical Services for Heart to Heart Hospice in Plano, Texas. “We want to keep patients comfortable and as independent as long as possible, giving them a hospice journey that they desire.” This includes supporting patients and managing their hospice care as they travel.

Preparing Hospice Patients for Travel

Traveling with a hospice patient is no small feat, but the rewards are invaluable. A patient or family can initiate the request to travel, then the entire Heart to Heart Hospice team — as the managing hospice provider — takes action to make it happen. 

Together, families and the hospice provider determine if the patient is stable enough to travel. Hospice doctors, RNs, social workers, chaplains, business offices, patient care secretaries, and even executive directors coordinate the moving parts:

• Arranging for needed medical equipment to be delivered and picked up at the destination.
• Gathering needed medicine and equipment for travel.
• Transferring to a contracted hospice provider in the area (Heart to Heart Hospice, if available, or another Medicare-certified hospice in the region) and completing the necessary paperwork.
• Providing local pharmacy and hospital contacts in case of medical needs or emergencies.

At the contracted hospice destination, all aspects of care continue as required, including nursing visits, aide support, social services, and spiritual support. If the stay is longer than 15 days, a care plan review may be due and provider changes considered. There is no limit to the length of stay, but caregivers and patients can initiate a transfer to a new managing hospice provider or revocation of Medicare hospice benefits.

“We also equip caregivers to anticipate needs and prepare them for a modified environment,” said Christian.

Travel Tips for Managing Hospice Care

After the patient is deemed stable for travel and the managing hospice team sets things in motion, it’s time for you, as the caregiver, to anticipate the patient’s needs while out of town. While this may seem overwhelming at first, we’ve provided a list of considerations and tips to help you navigate traveling with a hospice patient:

• Carry contact information of the contracted hospice provider at your destination, as well as addresses and numbers of the local hospital and pharmacy. 
• Airports or busy destinations may be noisy or overwhelming for a patient. Take noise-canceling headphones and plan extra time to move slowly and reduce stress.
• Think through modes of transportation and special accommodations, such as a car service that has room for wheelchair storage, needed assistance at the airport, and accessible hotel rooms.
• Determine if the room has a refrigerator for meds.
• Take medications in their original containers. Remember to keep all medications with you in a carry-on bag (not checked baggage) if flying. Take enough meds and supplies for the duration of your trip.
• If medications require syringes or needles, carry doctor’s documentation, plus a small discard container.
• Carry pertinent medical records and information with you.
• Contact the managing hospice provider when you arrive. 
• Remember to keep the patient hydrated.
• Pack other needed supplies, like sunscreen, hats, bandages, and ointments. 
• Be flexible. If the patient needs extra rest, modify your plans, (even shortening your trip, if necessary), to make their comfort the priority.

For more guidelines and travel tips, see the National Hospice and Palliative Care Organization’s updated Guide to Patient Travel in Hospice Care.

Traveling While on Hospice: Addressing Common Concerns

It may seem overwhelming to leave home while on hospice, but that’s where your hospice team can help. Here are some common concerns patients have about traveling while on hospice — and some helpful travel tips to put your mind at ease

CONCERN #1: I don’t want the event to be about me.

Most likely, your loved ones want these precious memories to include you. How special will it be for them to look back and remember your effort to attend? It’s easy to be self-conscious, but don’t worry if you require extra help or attention. The event will still focus on the honored individuals, and you’ll be there to join in the celebration as much as you’re able.

CONCERN #2: It’s so much work to travel with medications, medical equipment, etc.

It is work, but the hospice team members provide tremendous assistance. They help get your supplies together before you leave or make sure they’re available when you arrive at your destination. They create a plan and get your caregiver (who’s traveling with you) trained and ready. Plus, your managing hospice provider identifies and selects a Medicare-certified contracted provider at your destination. Both providers inform their business offices of the transfer and take care of Medicare billing. Remember to allow ample time in advance of your travel dates for coordination. All the planning is worth it for the happy results: seeing beautiful sites, connecting with loved ones, and making lifelong memories. 

CONCERN #3: The contracted hospice provider doesn’t know me.

Your file and clinical needs will be thoroughly communicated by your managing hospice provider to a contracted hospice provider for temporary care. Depending on the length of your visit and health needs, you could receive hospice nurse visits while out of town. A contracted hospice provider at your destination means your family caregiver has a local resource should any issues arise (medications, visits, on-call support).

CONCERN #4: I’m afraid I’ll be overwhelmed with all the people or attention.

Be realistic, especially if you haven’t been in public or around crowds since you’ve been on hospice. Plan plenty of time for travel, whether flying or driving. Arrange for needed medical accommodations, like early boarding and airport transportation or extra stops on road trips. Be flexible and account for lots of breaks. If you’re at an event, don’t feel guilty about needing time to rest away from the crowd.

CONCERN #5: I’m worried about medical accommodations, pain management, and whether I’ll be comfortable enough to sleep.

Get as much information as you can about the venue and living/sleeping arrangements. Do you need a place that’s accessible for a wheelchair or other assistive devices? Are there ample plug-ins for equipment and a refrigerator for medications? Are there climate considerations, like adequate heat and air conditioning? 

As mentioned, your hospice team will anticipate and provide medications, comfort measures, pain control, and needed equipment for symptom management for the duration of your trip. This could include getting needed medical equipment delivered once you reach your destination and 24-hour pharmacy information. Make sure you keep medications in your carry-on bag if you’re flying.

CONCERN #6: What if we need to cancel travel plans?

If you’re flying or booking accommodations, it may be wise to purchase travel insurance. Be flexible and willing to change your plans if necessary. Please note that some conditions, like late-stage Alzheimer’s and dementia, have strict criteria for hospice care that prevent the ability to travel.

Traveling while on hospice takes time and careful planning, but the rewards are immeasurable. Hospice care enhances quality of life no matter the number of days — and for many patients, that includes taking one last trip. Whether it’s to a beloved vacation spot or a loved one’s home, traveling offers the gift of cherished memories.

How Traveling Reconnected a Hospice Patient with His Son

Rachael Fuqua, a Community Education Representative with Heart to Heart Hospice in North Houston, relayed a story of a father who reunited with his son during his final months of life. Heart to Heart Hospice was instrumental in making the connection, then taking care of the details to fulfill the father’s wish to travel with his son to the Midwest to visit family.

The trip was such a success, the father/son duo traveled again for a gambling trip to Louisiana. Each time, Heart to Heart worked diligently to collect necessary medications, make arrangements in case of an emergency, and transfer service to a contracted hospice team at their destination.  

“Forgiveness, reconnecting, and saying goodbye were paramount for them both to reach a place of comfort and peace,” said Fuqua. “The situation really struck me at the time, but even more profoundly when the son called a year or two later asking us to care for his mother,” she added. “He remembered and deeply appreciated the relationship we facilitated with his dying father. To me, that is what the ‘Heart to Heart’ in our name is all about.”

“We help caregivers know what to expect,” said Christian. “We want to provide a seamless journey to travel, and also when they return home.” She recalled a mother who went on a cruise with her loved ones and a biker who enjoyed one last motorcycle ride. 

These priceless memories are achievable as the hospice team makes preparations and a willing caregiver takes their caregiving on the road.

Sources:

Read these FAQs on traveling with a hospice patient from the Texas and New Mexico Hospice Organization.

*The Medicare Modernization Act of 2003 provides that most patients receiving Medicare hospice benefits are eligible for care from another Medicare-certified hospice at their destination.