Coordinating medical care

[MaryannW299942]

My husband has stage 4 metastasized lung cancer so most of his doctor appointments are for cancer care, but he also has appointments for other specialists like gastroenterology, and other things. This month he is scheduled for 3 labs - 1 for chemo and 2 others for other doctors. At this stage, who can we turn to for advice on which doctor appointments/labs to keep and which ones to cancel?

Getting my husband, who is bed-ridden, into a wheelchair with oxygen just to go and get blood drawn is difficult on both of us. So we would like to trim down his care to just the most necessary care but we don't know who to turn to. (We currently have a call in to his palliative care team, but not sure if this falls under their purview.)

[MaryannW299942]

Thank you everyone for your replies. I'll have to look into mobile labs, I've never seen one in my state, New Hampshire, but I can check on it. Thanks.

[JaneCares]

And think about getting advice about what home hospice would mean. People sometimes live LONGER on home hospice with all the supportive care, the simplification of medicine, the end to stressful trips and tests.

Keep us posted if you like, and with all good wishes,

Jane

[agoyer · Accepted solution]

@MaryannW299942  Saw your note below that the labs got combined so that was good! I totally get it - it was so hard to take my parents out for labs and tests and doc appts - and that was before the pandemic! Now it's even more stressful and scary. A few more suggestions:

• Yes - definitely discuss with palliative care team - they should be able to help you coordinate all of the care, prioritize and focus on keeping him safe and comfortable top priority. 
• Have you looked into getting labs and other testing etc. done at home? When caring for my parents we had x-rays, blood-draws, swallow tests, ultrasounds, EKGs - all at home. Mobile labs are more readily available these days. But I find many doctors don't know about them so they don't offer it up or refer people to them. A few ways to find these services:
  • Ask the palliative care team about it.
  • Ask doctors about it. You can also search for a mobile doctor or one who makes house calls, and ask them about any laboratories etc. they use (even if you're not going to use the mobile docs they should be able to give you referrals).
  • Call the lab company your insurance uses (such as Labcorp, Sonoraquest etc.) and ask if they offer any mobile services in your area or if they have a referral for you.
  • Call your insurance company (or Medicare) and ask about mobile services and health care (doctors, Nurse practitioners etc.) who can come to the house.
  • Do an online search.  If you want to share where you live I can I do an online search for you also. We live in the Phoenix area so there was a lot more available than in some areas, but it's always a good idea to check. Saved us SO many trips out that were hard for my parents. 
  • In this video I shared some info about medical care at home: Medical Services at Home
  • In this video I shared some info about x-rays, labs etc at home: Mobile X-ray Services 
•  I wrote this column to help caregivers juggle all of the medical care of loved ones - maybe there will be something helpful in it for you! 9 Top Tips for Family Caregivers Managing Medical Matters

Hope this helps! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

[JaneCares]

Hi there

I used to be the social worker at a university chemotherapy clinic, and i was also a social worker at a home hospice team. It sounds like this is the point where you begin to weigh the burden of getting him to treatment and labs etc, and quality of life. Stage 4 lung cancer isn't curable as you know, sadly. Home hospice is an option for sure. Everything centers at your home, and all the palliative care under hospice is brought to you and him. 

If you or he do not want to do hospice, then i'd call his primary care provider and the oncologist (probably an RN or a PA who manages his  or her practice?) and point all this out. Providers will try to coordinate if you ask; they should do that anyway.

Home hospice will come to you both and talk to you before asking you to sign up. Is that what you mean by having a call into his palliative team?

Say more? And, good luck. This is really hard stuff.

Jane

a social worker now in primary care in a rural clinic

[MaryannW299942]

Went to lab #1 today - hubby wasn't feeling well. When we got there the lab had orders from all 3 doctors. One we have to do the day before chemo, but the lab let us do the other 2 today. Saved us one trip, at least.

[agoyer]

@MaryannW299942 That was going to be my first suggestion - the lab should be able to do it all at once even if for several doctors! Glad that worked out!!! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving