Palliative Care in the Home

A Filipino Experience

On the heels of last week’s Bruce’s Blog, about caring for a loved one in the home, we publish this week an excerpt from Bruce’s book, The Freedom Handbook for Living & Retiring in the Philippines, written by the adult child of a terminally ill parent who nursed her while living at home in Manila.  The event occurred several years ago, but the story and the advice are still totally applicable:

Margie’s Experience
Caring for a Parent
When we first got the diagnosis that Mom, in her eighties and very active, had colon cancer it was not only a shock, but we also had the hope and expectation that she would get better. We had hoped that she would be able to go through chemotherapy and radiation, which would bring her into remission, or perhaps even a total cure. Sadly this was not to be, and instead we were faced with a steady decline in her strength. Mom remained positive and strong throughout her illness, a testimony to her faith and all the people she cared so much for.
Early on the doctors asked me if I wanted my mom to know exactly what was happening.
I can only say that the decision I made at the time was what I felt was best for her and for our family. My mother was always fiercely independent. I felt that she would want to know exactly what was happening to her, and that she was perfectly capable to make the decisions she felt most comfortable with. She was also very intelligent, and I was sure that if we tried to keep things from her, that she would figure things out on her own . I felt that we needed to be able to trust each other, not knowing what might face us.
However when Mom had to have a stoma, the doctor did not seem to think that she would be able to have surgery at a later date to reverse this procedure. The stoma would be permanent. I asked the doctor at the time to keep this information from her, which he agreed to do, as he and I both hoped she would have an easier time getting used to this new way of life if she felt it would be temporary. We would break the news to her a little bit at a time, to give her a chance to process and deal with it.
As my mother was in the recovery room, having just had her stoma surgery, the doctor came out to talk to me and gave me the worst diagnosis I could have heard. I was totally unprepared for it. He tried to soften the blow as he stated that the extent of my mother’s cancer was worse than they had thought, and that it was his belief that she would only have three months left to live. Chemotherapy was no longer an option.
We stayed for quite a while in the hospital after the surgery; a few weeks. Mom made the decision that she would like to go home, and not return anymore to the hospital. In order to comply with that desire, I set up her bedroom at home as a hospital room, and I hired four nurses who would work in shifts, but live at her house for the duration. I organized with the hospice for amazing palliative care doctors to come regularly to visit mom at home (Editor’s Note:  please refer to the Index of Professionals, “P”, Palliative & Hospice care for recommended institutions). I had no idea what I was doing at the outset, but by the the end of the experience I can say that I was an expert at managing this situation.
Should you want to do the same for your loved one as I did with mine, I would like to share with you a few suggestions:
As a family prepares to take the patient home, on the day of discharge, the hospital gives them a list of medications and supplies necessary to care for the patient. The day that a patient is being discharged is already a stressful day; it is not a good day to run all over town looking for the things that you need so that the patient remains comfortable. In order to prepare for a smooth transition, request that this list of medicine and supplies be given to you a few days in advance of the patient being discharged. This gives the family a chance to get everything ready beforehand. This would make the move from the hospital to the home smoother and less hectic for all concerned. Also, you will have whatever you need on hand so that the patient does not have to suffer while a needed item is obtained from somewhere else.
The hospital should also provide you with a list of all the pharmacies in your area (especially the ones which are open for 24 hours) so that the family is not hunting around, trying to find what they might need. Perhaps a survey should be taken of where to buy certain medications the patient might need, as I found out that not all of the pharmacies have a steady supply of medications needed for I.V. use.
Lists of suppliers, complete with phone numbers and addresses, can be obtained from the hospital as well as their recommendations for suppliers of things such as oxygen tanks, suction machines, hospital beds, I.V. stands, and an ambulance service (Editor’s Note:  ELRAP highly recommends Lifeline Philippines as an ambulance service, please consult Index of Services & Supplies for contact information as well as last month’s Medical Matters blog). Some of these items may not be needed immediately upon leaving the hospital, but the need may arise once the patient is at home. If an emergency happens, the family is left in total panic as they are unprepared to obtain the items they will need.
When we first left the hospital, they suggested that I get some of the medical supplies from Bambang (in the old part of Manila). Although they had quite a lot available there for lower prices than in Alabang or Makati, I did find that it was not always advisable to buy too much of any item since things change, and you sometimes end up with too much of one item that all of a sudden you don’t need anymore. Also some items available in Bambang were of inferior quality, and caused more anxiety than the savings were worth because you could never depend on them. For instance in the case of the stop cock used for the I.V., the ones that I got from Bambang would break constantly, and start leaking, so they had to be changed more often, and ended up costing more.
If the family will need a nurse or a caregiver, or both, once the patient is at home, they should already have found, interviewed, and hired these people while the patient is still in the hospital (Editor’s Note: for Nursing Services, please refer to the Index of Professionals “N” Nurses (readers who would like to recommend a service, please send us an e-mail with the information to elrap101@gmail.com (we will have your recommendation vetted with much appreciation), otherwise, we would suggest consulting the local hospital for nurses and/or caregivers). The nurse and/or caregiver can learn directly from the doctors and the nurses at the hospital exactly what is required to care for the patient. They will know not only the procedures and medications, but they will also meet and come to know the doctors. This makes communication between professionals much smoother.
There are agencies where you can hire nurses and caregivers, but these are usually quite expensive (Editor’s Note: about US$300.00-400.00 per month in salary). In my case, I found that the nurses who were recommended by the doctors or through friends were not only more affordable, but better than the ones I interviewed from the agencies. Also, they came with excellent references, as I knew and trusted the opinion of most of the people they had already worked with.
You must assume that most family members, such as myself, have no medical experience when they are faced with taking a patient home, and are totally unprepared for what this means. It becomes quite an overwhelming feeling to know that the care, safety and responsibility of caring for someone you love rests totally in your hands when you have no idea what you are doing.
I was very lucky to work with doctors who did not mind my endless questions, emails, and the letters I would leave at their offices. They treated me with patience and respect. Even though they must have been perhaps annoyed with me at times, they were always understanding. I believe it is important to find doctors who you are comfortable with; they will be important members of the journey you are taking, and you and your loved one must be able to be open and forthright with them.
I cannot stress enough the importance of this. From the beginning an open and honest relationship needs to be established. There are many wonderful, competent doctors in the Philippines, and though it may take some homework on the part of the family or patient to find the ones who you can communicate with, it is well worth the effort and will ease the stress of the situation in the long run.
Families should be informed of establishments such as Alabang Hospice, or other organizations where not only can they borrow equipment, but they can also get counseling and spiritual support.
For example-Asian Hospital has a support group for families and patients with cancer, while Alabang Hospice (a.k.a. Ruth Foundation) has people who volunteer to visit families to help them through difficult times.

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